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DTSTART:20210314T070000
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DTSTART;TZID=America/New_York:20221214T180000
DTEND;TZID=America/New_York:20221214T220000
DTSTAMP:20260530T214035
CREATED:20220921T181444Z
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UID:967-1671040800-1671055200@ppals.org
SUMMARY:EveryLife Foundation Rare Voice Awards\, Washington DC
DESCRIPTION:Awardees receive an “Abbey” statuette commissioned specially for the RareVoice Awards\, and named for Abbey Meyers\, founder of the National Organization for Rare Disorders (NORD). \n\n\n\n\n\nRareVoice Awards recipients are chosen by a committee from nominations received from the rare disease community. Thank you to the members of the RareVoice Nominations Committee\, including: \nDavid Eckstein\, Office of Clinical Research\, NIH\nStephen Groft\, EveryLife Foundation Board Member\nSarah-Lloyd Stevenson\, Amazon\nLisa Schill\, Patient Advocacy and Engagement Consultant\nKathleen Tighe\, Sanofi Genzyme\nShayne Woods\, Office of Senator Tim Scott
URL:https://ppals.org/event/everylife-foundation-rare-voice-awards-washington-dc/
LOCATION:Arena Stage at The Mead Center for American Theater\, 1101 6th St SW\, Washington\, D.C\, DC\, 20024\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221213
DTEND;VALUE=DATE:20221214
DTSTAMP:20260530T214035
CREATED:20220921T180813Z
LAST-MODIFIED:20220921T180813Z
UID:964-1670889600-1670975999@ppals.org
SUMMARY:BioNJ Patient Advocacy Summit
DESCRIPTION:
URL:https://ppals.org/event/bionj-patient-advocacy-summit/
LOCATION:Bristol Myers Squibb\, Lawrenceville\, NJ\, NJ\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221017
DTEND;VALUE=DATE:20221019
DTSTAMP:20260530T214035
CREATED:20220921T180258Z
LAST-MODIFIED:20220921T180258Z
UID:962-1665964800-1666137599@ppals.org
SUMMARY:NORD Breakthrough Summit\, Washington DC
DESCRIPTION:NORD Summit\nOctober 17-18 2022   \nThis year\, NORD is thrilled to welcome all community stakeholders back together in-person to Washington\, DC for the 2022 Rare Diseases and Orphan Products Breakthrough Summit. Join your fellow rare disease leaders from patient advocacy groups\, government\, industry\, and academia for exclusive access to fresh insights\, compelling connections\, and expert resources. Don’t miss out on #NORDSummit – registration is OPEN now!
URL:https://ppals.org/event/nord-breakthrough-summit-washington-dc/
LOCATION:Marriot Marquis in Washington\, DC
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220520
DTEND;VALUE=DATE:20220522
DTSTAMP:20260530T214035
CREATED:20220406T164137Z
LAST-MODIFIED:20220406T164137Z
UID:872-1653004800-1653177599@ppals.org
SUMMARY:12th Annual Great Plains Rare Disease Summit
DESCRIPTION:Sanford Research and its investigators have a strong interest in and commitment to finding cures and treatments for rare diseases.  In honor of the 15th annual celebration of Global Rare Disease Day on February 29th\, 2022\, Sanford Research will be hosting the 12th Annual Great Plains Rare Disease Summit hybrid this year. We welcome you to join us in person\, or virtually. The theme for the 2022 Summit will focus on Approaches in Genomic Medicine and Rare Diseases. Please see the attached flyer for further details. \nThe two-day summit will be on Friday\, May 20th – Saturday\, May 21st. The scientific component will be on Friday\, May 20th with presentations throughout the day. The goal on Friday is to educate on both clinical and research aspects of rare diseases. Saturday\, May 21st\, will be tailored towards patients\, families\, caregivers and patient advocacy groups. \nIf you have further questions\, please feel free to contact us at cords@sanfordhealth.org and we can provide you with further details about the event. \nRegistration Link: https://bit.ly/37PAjib   
URL:https://ppals.org/event/12th-annual-great-plains-rare-disease-summit/
LOCATION:Sanford Research Center\, Sioux Falls\, SD\, Sioux Falls\, SD\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20211215T140000
DTEND;TZID=America/New_York:20211215T150000
DTSTAMP:20260530T214035
CREATED:20211202T184727Z
LAST-MODIFIED:20211202T184727Z
UID:834-1639576800-1639580400@ppals.org
SUMMARY:PPALS Webinar Series
DESCRIPTION:Shaping the Patient Advocate Role through Health Equity\, Diversity and Inclusion \nPart 1: Diversity in Talent of Patient Advocacy\nJoin us for a webinar series that will educate on how Diversity\, Equity\, Inclusion and Allyship (DEIA) works internally as a function and also strategically in external relationships and collaborations. \n\nIn Part 1 of this two-part webinar series\, attendees will learn how several of our colleagues navigated their careers as underrepresented individuals in the field of patient advocacy. Panelists will address the challenge of men underrepresented in the field of patient advocates\, where diverse talent may be identified\, and the value of having a diverse patient advocacy team within an industry setting. \nThe webinar will be moderated by Veronica Moore\, Senior Manager\, Patient Advocacy\, Horizon Therapeutics\, joined by the following panelists: \n• Paul Lim\, Associate Director\, Patient Advocacy at Blueprint Medicines\n• Daniel Martinez\, Manager\, Patient Advocacy for the Gout Business Unit at Horizon Therapeutics\n• Michele Rhee\, Vice President of Patient Affairs and Advocacy at X4 Pharmaceuticals \nPlease click on the link below for free registration. Space is limited so be sure to register soon.
URL:https://ppals.org/event/ppals-webinar-series-2/
LOCATION:DC
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210223T130000
DTEND;TZID=America/New_York:20210223T130000
DTSTAMP:20260530T214035
CREATED:20210210T194803Z
LAST-MODIFIED:20210210T200845Z
UID:753-1614085200-1614085200@ppals.org
SUMMARY:PPALS Webinar Series
DESCRIPTION:The Integration of the Patient Voice in Metrics to Predict Clinical Trial Success\n\n\n\n\nJoin us to learn how BioMarin\, a global pharmaceutical company\, has effectively used metrics to incorporate the patient voice into their clinical development program. Mike Bodulow\, Manager\, Global Patient Advocacy & Engagement\, will discuss the use of metrics in patient engagement to decrease the risk of clinical trial failure. This presentation fulfils Mike’s Sanford/Professional Patient Advocates in Life Sciences (PPALS) Patient Advocacy Certificate Training (PACT) Capstone project. \nMike joined BioMarin in April of 2014\, with a passion for improving the lives of patients and families living with rare diseases. Mike started in the Global Project Management group and has leveraged his organizational knowledge to establish metrics\, develop portfolio-wide processes and generate timelines to track progress against the Global Patient Advocacy & Engagement strategic plans. His overarching goal is to ensure that patient advocacy becomes embedded within the standard operating procedures\, processes\, forums and timelines at BioMarin to ensure the patient voice is leveraged early\, often and consistently across all programs. He also manages the Patient Advocacy Leadership Councils\, the therapeutic-area Patient Advocacy and Partnership Teams\, as well as the Patient Engagement Teams. \nMike completed his undergraduate studies in communications at San Jose State University\, is a certified associate in project management with the Project Management Institute\, and has minors in mathematics and history. Mike is based in Tulsa\, Oklahoma\, where he became a member of the original “Tulsa Remote” cohort.
URL:https://ppals.org/event/ppals-webinar-series/
LOCATION:DC
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200614
DTEND;VALUE=DATE:20200619
DTSTAMP:20260530T214035
CREATED:20190703T020111Z
LAST-MODIFIED:20190703T020111Z
UID:646-1592092800-1592524799@ppals.org
SUMMARY:DIA 2020 Global Annual Meeting in Washington
DESCRIPTION:About DIA 2020 Global Annual Meeting\n\nFor more than 50 years\, DIA has provided the world’s largest global\, neutral stage for life science professionals to come together and address healthcare challenges. Driven by purpose and focused on the future of health\, the stakeholders who gather at our Global Annual Meeting advance science and technology for public health impact – today\, and for generations to come. \nDIA\, founded as the Drug Information Association\, provides a global\, neutral forum where stakeholders can openly and freely exchange knowledge information and insights beyond boundaries to advance innovation in healthcare product development and lifecycle management globally. \nThe DIA Annual Meeting is the largest\, longest-running event in the life sciences industry designed to foster the international exchange of actionable insights to improve health globally through the advancement of lifesaving medicines and technologies. DIA 2020 will host thousands of professionals in the pharmaceutical\, biotechnology\, and medical device communities from more than 50 countries around the globe. \nMore Information
URL:https://ppals.org/event/dia-2020-global-annual-meeting-in-washington/
LOCATION:Washington\, DC
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200225
DTEND;VALUE=DATE:20200229
DTSTAMP:20260530T214035
CREATED:20190703T005250Z
LAST-MODIFIED:20190703T005250Z
UID:636-1582588800-1582934399@ppals.org
SUMMARY:Rare Disease Week on Capitol Hill 2020
DESCRIPTION:WHAT IS RARE DISEASE WEEK ON CAPITOL HILL?\n\n\nRare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues\, meet other advocates\, and share their unique stories with legislators. \n\nRegistration for Rare Disease Week on Capitol Hill 2020 will open in January 2020. \nTentative Schedule of Events \nThe week includes the following events\, all of which are free for patients\, caregivers and other advocates. \nTuesday\, February 25th: Rare Disease Congressional Caucus briefing \nTuesday\, February 25th: Cocktail Reception and Rare Disease Documentary Screening \nWednesday\, February 26th\, 8:00 am – 4:45 pm: Legislative Conference at the Ronald Reagan Building. \nThursday\, February 27th: Lobby Day Breakfast \nThursday\, February 27th\, 9:00 am – 5:00 pm: Scheduled Meetings with Members of the House and Senate on Capitol Hill \nThursday\, February 27th: Rare Artist Reception \nFriday\, February 28th: Rare Disease Day at NIH in Bethesda\, MD \nThe Rare Disease Week on Capitol Hill Legislative Conference and Lobby Day is an event established for patients and caregivers\, patient advocates\, and patient advocacy organizations. While representatives from industry are invited to attend the Legislative Conference\, the lobby day is for patients and caregivers\, patients advocates\, and patient advocacy organizations only. \nTRAVEL ARRANGEMENTS \nAttendees need to make their own travel arrangements including hotel reservations. \nLEARN MORE
URL:https://ppals.org/event/rare-disease-week-on-capitol-hill-2020/
LOCATION:Washington\, DC
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200210
DTEND;VALUE=DATE:20200214
DTSTAMP:20260530T214035
CREATED:20190703T003729Z
LAST-MODIFIED:20190703T004239Z
UID:626-1581292800-1581638399@ppals.org
SUMMARY:16th Annual WORLDsymposium
DESCRIPTION:WORLDSymposium™ is an annual research conference dedicated to lysosomal diseases. WORLD is an acronym that stands for We’re Organizing Research on Lysosomal Diseases. Since its inception as a small group of passionate researchers in 2002\, WORLDSymposium has grown to an international research conference that attracts over 1900 participants from more than 50 countries around the globe \n“WORLDSymposium 2020” 16th annual research meeting\nFebruary 10\, 2020: Council of Patient Advocates (COPA) and Emerging Trends: State-of-the-Art for Experts\nFebruary 11-13: Research Meeting\nFebruary 13: Council of Research Experts (CORE)\nHyatt Regency Orlando\n9801 International Drive\nOrlando\, Florida\, USA\, 32819\, USA \nWORLDSymposium™ is a licensed annual scientific research meeting\, directed by Chester B. Whitley\, PhD\, MD\, Course Director\, and organized by an independent planning and organizing committee. \nWORLD is the acronym for We’re Organizing Research on Lysosomal Diseases \nMission\nThe goal of WORLDSymposia is to provide an interdisciplinary forum to explore and discuss specific areas of interest\, research and clinical applicability related to lysosomal diseases. Each year\, WORLDSymposia hosts a scientific meeting (WORLDSymposium) presenting the latest information from basic science\, translational research\, and clinical trials for lysosomal diseases. WORLDSymposium is designed to help researchers and clinicians to better manage and understand diagnostic options for patients with lysosomal diseases\, identify areas requiring additional basic and clinical research\, public policy and regulatory attention\, and identify the latest findings in the natural history of lysosomal diseases. \nMore information
URL:https://ppals.org/event/16th-annual-worldsymposium/
LOCATION:Hyatt Regency Orlando\, 9801 International Drive\, Orlando\, FL\, 32819\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200113T080000
DTEND;TZID=UTC:20200115T170000
DTSTAMP:20260530T214035
CREATED:20190703T001356Z
LAST-MODIFIED:20190703T001542Z
UID:622-1578902400-1579107600@ppals.org
SUMMARY:Rare in the Square
DESCRIPTION:Set in San Francisco’s Union Square\, RARE in the Square brings together rare disease innovators to forge partnerships and advance innovation. The event takes place in concurrence with the J.P. Morgan Healthcare Conference\, one of the most significant industry events of the year. The opportunity to network with industry thought leaders and promote the role of patients as partners and drivers in rare disease drug development lays the foundation for positive change in the rare disease space. \n  \n  \n\n\n\nFrom: 01/13/2020 – To: 01/15/2020 \n\n\n08:00 AM – 05:00 PM UTC-12:00 \n\n\n335 Powell Street\, San Francisco\, California\, United States of America
URL:https://ppals.org/event/rare-in-the-square/
LOCATION:Union Square\, 335 Powell Street\, San Francisco\, CA\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200112T183000
DTEND;TZID=UTC:20200112T220000
DTSTAMP:20260530T214035
CREATED:20190703T000014Z
LAST-MODIFIED:20190703T000014Z
UID:619-1578853800-1578866400@ppals.org
SUMMARY:A Rare Affair
DESCRIPTION:Join 250 venture capitalists\, biotech and finance executives\, wine enthusiasts and rare disease advocates on Sunday\, January 12th for A Rare Affair\, the wine tasting and networking event hosted by the EveryLife Foundation for Rare Diseases. \nThe EveryLife Foundation for Rare Diseases works to accelerate biotech innovation for treatments for patients with rare diseases through science-driven public policy. The focus of this fundraising event is to enjoy the wine\, the food and the company\, while raising awareness of the urgent need for development of rare disease treatments. All proceeds support the Foundation’s educational programs within the rare disease community. \nClick Here for More Information \nContact: Ted Brasfield\nContact Phone: 7034777734\nContact Email: tbrasfield@everylifefoundation.org
URL:https://ppals.org/event/a-rare-affair/
LOCATION:San Francisco\, CA\, San Francisco\, CA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20191204T180000
DTEND;TZID=UTC:20191204T223000
DTSTAMP:20260530T214035
CREATED:20190702T234932Z
LAST-MODIFIED:20190702T234932Z
UID:616-1575482400-1575498600@ppals.org
SUMMARY:Rare Voice Awards
DESCRIPTION:The RareVoice Awards is an annual celebration to honor advocates who give rare disease patients a voice on Capitol Hill. Patient advocates\, industry executives\, and Congressional and government agency staff gather to honor these outstanding advocates for the rare disease community. This is a widely attended public event. 2019 will mark the 8th year of the RareVoice Awards\, which will be held December 4th at the Arena Stage in Washington\, DC. Nominations will open in the Spring of 2019. \nAward recipients are chosen by committee from nominations received from the rare disease community. Awardees receive an “Abbey” statuette commissioned specially for the RareVoice Awards\, and named for Abbey Meyers\, founder of the National Organization for Rare Disorders (NORD). The event will be held December 4\, 2019 at the Arena Stage in Washington\, DC. There is no cost to attend the event in order to permit Members of Congress as well as Congressional and governmental staff to attend. \n6:00 p.m. Cocktail Reception 7:30 p.m. Congressional Toast 8:00 p.m. Awards Ceremony\n 9:00 p.m. After Party Celebration\nArena Stage  1101 6th Street\, SW  Washington\, DC\nComplimentary Valet  Business or Formal Attire\nThis is a free and widely attended event
URL:https://ppals.org/event/rare-voice-awards/
LOCATION:Arena Stage\, 1101 6th Street\, SW\, Washington\, DC\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191112
DTEND;VALUE=DATE:20191115
DTSTAMP:20260530T214035
CREATED:20190702T233153Z
LAST-MODIFIED:20190702T233234Z
UID:613-1573516800-1573775999@ppals.org
SUMMARY:International Conference on Rare Diseases & Orphan Drugs (ICORD) 14th Annual Meeting*
DESCRIPTION:ICORD is an International Society for all individuals actively involved in rare diseases and/or orphan drugs\, including health care\, research\, academic\, industry\, patient organisations\, regulatory authorities\, health authorities\, and public policy professionals. \nThe mission of ICORD is to improve the welfare of patients with rare diseases and their families world-wide through better knowledge\, research\, care\, information\, education and awareness. \nOne of the main activities of ICORD is the organisation of the ICORD annual meetings\, which have been successfully arranged ten times all over the world. \nThe idea of an international society for rare diseases was born already at the first ICORD conference. The conference was held 2005 in Stockholm\, Sweden\, with support by Karolinska Institutet in Stockholm\, the National Institutes of Health (NIH) in the US and the Research Directorate General of the European Commission. The formation of the ICORD Society was a process where many different stakeholders met and discussed mission and aims of ICORD during 2006 and 2007. \nThe second ICORD Conference was held as a one day meeting in conjunction to the EPPOSI Meeting in Madrid\, Spain\, 26-27 October\, 2006. ICORD 2006 was a meeting aimed at identifying important areas for future work and planning of upcoming ICORD conferences. \nThe ICORD 2007 Conference was an open two-day-meeting in Brussels 14-15 Sept\, 2007\, held back-to back with the European Commission conference “Rare Diseases Research: Building on Success”. During the conference the ICORD Society was formed.
URL:https://ppals.org/event/international-conference-on-rare-diseases-orphan-drugs-icord-14th-annual-meeting/
LOCATION:Tel Aviv\, Israel
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191112
DTEND;VALUE=DATE:20191115
DTSTAMP:20260530T214035
CREATED:20190702T231213Z
LAST-MODIFIED:20190702T231213Z
UID:606-1573516800-1573775999@ppals.org
SUMMARY:World Orphan Drug Congress 2019 - Europe
DESCRIPTION:World Orphan Drug Congress is Europe’s meeting place for the rare disease community. The Conference offers strategic keynote plenaries\, themed tracks and dedicated networking sessions\, you have the chance to really tailor the event to the needs of your day-to-day role. \nExhibitors have a unique opportunity to put their business products and services in front of potential buyers looking to source the latest technologies in the orphan drugs industry. \nMeet and listen to biotech start-ups and investors in our Pitch & Partner track where the most promising companies showcase their orphan drug technology and pipeline. \nMore information
URL:https://ppals.org/event/world-orphan-drug-congress-2019-europe/
LOCATION:Barcelona\, Spain
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190918T130000
DTEND;TZID=UTC:20190920T133000
DTSTAMP:20260530T214035
CREATED:20190702T230112Z
LAST-MODIFIED:20190702T230112Z
UID:599-1568811600-1568986200@ppals.org
SUMMARY:2019 PCORI Annual Meeting*
DESCRIPTION:2019 PCORI Annual Meeting – Making a Difference: Using Patient-Centered Research Results in the Real World\n\n\n\n\n\n\n\n\n \nAs part of this year’s theme\, “Making a Difference: Using Patient-Centered Research Results in the Real World\,”attendees at the two-and-a-half-day conference will learn about how patients\, researchers\, clinicians\, payers\, and others across the healthcare community are working to make health research more useful and relevant. In addition\, hear about the latest results of PCORI-funded research and efforts to promote their use in practice\, and find out how our unique approach to engaging patients and other stakeholders in the work we do is changing the way health research is conducted. Attendees can also hear about how PCORI can best serve the healthcare community into the future. You can register now to reserve rooms at the conference site hotel at special discounted rates. We look forward to seeing you in September. \nFind Out More and Register Now!
URL:https://ppals.org/event/2019-pcori-annual-meeting/
LOCATION:Washington Marriott Wardman Park\, 2660 Woodley Road NW\, Washington\, DC\, 20008
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190918T080000
DTEND;TZID=UTC:20190920T170000
DTSTAMP:20260530T214035
CREATED:20190702T225216Z
LAST-MODIFIED:20190702T225216Z
UID:596-1568793600-1568998800@ppals.org
SUMMARY:Rare Patient Advocacy Summit*
DESCRIPTION:As the largest gathering of rare disease patients\, caregivers\, thought leaders and other rare disease stakeholders in the world\, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change. \nThis year\, the Summit will take place in San Diego at the Sheraton San Diego Hotel & Marina. \n\nYour Summit Experience\n» A jam-packed\, two-day program filled with TED-style keynotes and five tracks of compelling educational content ranging from the latest in care to cutting-edge research and therapies. \n» 100 exhibits featuring programs and services for the rare disease community. \n» Workshops\, dinners and networking activities to inspire conversations and spark collaborations. \n» The Summit app with the tools to help you navigate session tracks like a pro\, communicate and network with Summit attendees from around the world. \n» The awe-inspiring RARE Champions of Hope Celebration honoring the individuals who are relentless in their efforts to affect change for the rare disease community through advocacy\, collaboration and medical care and treatment. \nTravel Scholarships: The priority deadline to apply for a travel scholarship has passed. Any applicants will now be put on the waitlist. Please view the FAQs for more information. \n\n\n\nFrom: 09/18/2019 – To: 09/20/2019 \n\n\n08:00 AM – 05:00 PM UTC-12:00 \n\n\n1380 Harbor Island Drive\, San Diego\, California\, United States of America
URL:https://ppals.org/event/rare-patient-advocacy-summit/
LOCATION:Sheraton San Diego Hotel and Marina\, 1380 Harbor Island Drive\, San Diego\, CA\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190905T083000
DTEND;TZID=UTC:20190905T160000
DTSTAMP:20260530T214035
CREATED:20190702T224100Z
LAST-MODIFIED:20190702T224100Z
UID:593-1567672200-1567699200@ppals.org
SUMMARY:11th Annual Rare Disease Scientific Workshop
DESCRIPTION:11th Annual Rare Disease Scientific Workshop:\nScience of Small Trials in the Age of Biological Plausibility\nThursday\, September 5\, 2019\n8:30 a.m. until 4:00 p.m.\nWillard InterContinental Washington\n1401 Pennsylvania Ave NW\, Washington\, DC 20004\nJOIN THE WAITLIST \nThe full day’s workshop will also be livestreamed. \nThe rapid pace of innovation in the biotechnology industry\, and new generation of modern\, targeted medicine\, has created exciting opportunities to bring cutting edge treatments to patients with rare diseases. Despite increased interest and investment in rare disease product development\, challenges in the development and regulatory process still threaten the pipeline of lifesaving therapies. \nThis fall\, the EveryLife Foundation for Rare Diseases will convene its 11th annual Rare Disease Scientific Workshop to explore the science of small trials in the age of biological plausibility. Historically\, randomized controlled trials were considered the “gold standard” to provide evidence of clinical benefit for specific therapeutic interventions in large populations. The workshop will consider whether there are other approaches better suited to severe diseases with high levels of heterogeneity. In the precision medicine era\, we are capable of matching genotypes and specific mutations to the right therapies which should enrich studies for responsive patients. How do we manage these even narrower definitions and smaller patient populations with the challenge of conducting trials? \nThe goal of the workshop will be to gather key thought-leaders from industry\, the FDA\, and patient organizations to discuss potential models\, best practices and the pathway forward for alternative trial designs. The presentation of successful case studies will provide issues for discussion and potential solutions for others seeking to develop rare disease therapies. Following the workshop\, a “guide” will be published detailing recent successful approaches to clinical trials for small\, heterogenous patient populations. The Workshop will also prioritize finding actionable takeaways to the following questions: \n• What methodologies would improve approval pathways for small heterogeneous patient populations? \n• How can novel clinical trial designs effectively manage variation in small study sizes while still retaining the rigor required for pivotal     studies? \n• How can multi-domain responder analyses assess a magnitude of clinical effect across multiple domains that are deemed to be clinically relevant in a small clinical trial? \n• How can we foster acceptance and use of biomarker-based endpoints as sufficient primary measures to support approval\, as well as better utilize the totality of data\, to reasonably predict clinical benefit during rare disease drug development? \nWe are actively soliciting case studies to be presented at the Workshop. Senior leadership from FDA will also be invited to present their perspectives on trial design. While this event is free and open to the public\, space is limited to 125 attendees to yield productive collaboration and discussion. Registration\, which opens on May 31\, 2019\, routinely reaches capacity once it is opened. Guaranteed seating is available via sponsorships. For more information\, contact Carol Kennedy at ckennedy@everylifefoundation.org or Ted Brasfield at tbrasfield@everylifefoundation.org. \nLearn more about the Annual Scientific Workshop.
URL:https://ppals.org/event/11th-annual-rare-disease-scientific-workshop/
LOCATION:Willard InterContinental Washington\, 1401 Pennsylvania Ave NW\, Washington\, DC\, 20004\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190730
DTEND;VALUE=DATE:20190801
DTSTAMP:20260530T214035
CREATED:20190702T223150Z
LAST-MODIFIED:20190702T223150Z
UID:589-1564444800-1564617599@ppals.org
SUMMARY:8th Annual Life Science Strengthening Patient Advocacy Engagement Conference
DESCRIPTION:Enhancing Patient Advocacy Initiatives through an Increased Focus on Diverse Patient Populations and Comprehensive Alliance Building Efforts While Strategizing for Innovative and Improved Access Opportunities\, Optimizing Data Circulation and Partnering for Patient Success \n\n\n\n\nAdvocacy executives engaged in strengthening patient engagement efforts are working to increase representation and collaboration between manufacturers\, advocacy groups\, and patients. To highlight the patient voice\, promote positive efforts within the advocacy landscape\, and establish methods for defining and communicating product information to patient communities\, manufacturers and advocate groups are partnering to increase communication with patient communities and establish avenues for access to products amidst challenges. Due to the significant access obstacles that patients face\, advocacy roles have become increasingly significant in effectively communicating patient needs. Establishing a well-developed\, patient centric approach is accomplished by employing innovative methods and developing the patient advocate role internally and externally. \nIn the 8th edition of the Life Science Strengthening Patient Advocacy Engagement Conference\, participants will have an opportunity to exchange best practices with manufacturers and advocacy professionals by participating in deep-dive case studies and engaging group discussions which highlight the extensive growth that has taken place in this evolving patient advocacy landscape. Panel discussions will also play a critical role within the program\, providing participants with an opportunity to engage with colleagues and learn from peers in a structured\, dialogue-based format which seamlessly blends education with professional networking.
URL:https://ppals.org/event/8th-annual-life-science-strengthening-patient-advocacy-engagement-conference/
LOCATION:Philadelphia\, PA Four Points by Sheraton Philadelphia City Center\, 1201 Race St\, Philadelphia\, PA\, 19107
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190713
DTEND;VALUE=DATE:20190714
DTSTAMP:20260530T214035
CREATED:20190702T215356Z
LAST-MODIFIED:20190702T215356Z
UID:578-1562976000-1563062399@ppals.org
SUMMARY:Rare on the Road
DESCRIPTION:The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road\, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients\, caregivers and other advocates.\nWe are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you! \nThe 2019 event dates and locations are below. Register today at RAREtour.org \n\n\n\n\n\n\n\nSaturday\, July 13\, 2019; Sioux Falls\, SD\n\nLEARN how to tell your rare disease story.\nRECOGNIZE how you can impact public policy and help save lives.\nCONNECT with other rare disease patients and advocates.\nDISCOVER how to get engaged on social media. Featuring Mayo Clinic social media experts. \nWant to join us\, but need help covering travel costs? Apply for a travel stipend today. \nDue to the generous support of our sponsors\, breakfast\, lunch and a tour t-shirt are included! \nFor information on 2019 sponsorship opportunities\, please contact Carol Kennedy at ckennedy@everylifefoundation.org. \nRARE on the Road is co-hosted by:
URL:https://ppals.org/event/rare-on-the-road/
LOCATION:Sanford Research Center\, Sioux Falls\, SD\, Sioux Falls\, SD\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190510
DTEND;VALUE=DATE:20190512
DTSTAMP:20260530T214035
CREATED:20190325T231231Z
LAST-MODIFIED:20190325T231231Z
UID:545-1557446400-1557619199@ppals.org
SUMMARY:Sanford CoRDS Great Plains Rare Disease Day Summit
DESCRIPTION:The Great Plains Rare Disease Summit – Scientific Day\nFriday\, May 10\, 2019\n8:00 a.m. – 4:30 p.m. \nPre-registration required by May 3\, 2019\nFor questions\, please contact cords@sanfordhealth.org \n\nSpeakers:\n\nTinna Urv\, PhD – Program Director\, Office of Rare Diseases Research\nDaniel Cohn\, PhD – Professor of Molecular\, Cell and Developmental Biology\, UCLA\nGiovanni Manfredi\, MD-PhD – Professor of Neurosciences\, Feil Family Brain and Mind Research\nInstitute\nSean Ekins\, PhD – Founder and CEO\, Collaborations Pharmaceuticals\, Phoenix Nest\, Inc.\n\nJoin us for a day of learning\, networking and most importantly\, connecting. If you are interested in\nhosting a booth\, please email cords@sanfordhealth.org \n\nThe Great Plains Rare Disease Summit – Community Day\nSaturday\, May 11\, 2019\nSanford Research Center\, Sioux Falls\, SD \nAt this event\, people living with a rare disease and/or their caregivers will be able to: \n\nMeet with scientists researching rare disease\nAttend speaker panels with presentations followed by question and answer sessions\nVisit with local organizations and vendors that support the rare disease community\n\nJoin us for a day of learning\, networking and most importantly\, connecting. If you are interested in\nhosting a booth\, please email cords@sanfordhealth.org \nThis event is free to attendees.
URL:https://ppals.org/event/sanford-cords-great-plains-rare-disease-day-summit/
LOCATION:Sanford Research Center\, Sioux Falls\, SD\, Sioux Falls\, SD\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190506
DTEND;VALUE=DATE:20190510
DTSTAMP:20260530T214035
CREATED:20190313T230239Z
LAST-MODIFIED:20190422T194554Z
UID:536-1557100800-1557446399@ppals.org
SUMMARY:Sanford/PPALS Patient Advocacy Certificate Training (PACT) 2019
DESCRIPTION:Sanford/PPALS Patient Advocacy Certificate Training (PACT)\nMay 6-9\, 2019\nSanford Research Institute\, Sioux Falls\, SD\nProfessional Patient Advocates in Life Sciences (PPALS)\, in conjunction with Sanford Research Institute\, will host its 4th annual PACT course of study for health and life science professionals and leaders of patient advocacy organizations to enhance their professional development. This specially designed curriculum focuses on increasing the competencies and expertise of patient advocates in the life sciences and assisting Patient Advocacy Organizations (PAO) senior\nleadership and board members to work on their governance and infrastructure skills. \nNew this year is the introduction of a Level 201 for both Tracks I and II. A continuation of the curriculum and discussions from Level 101\, Level 201 will be offered only to individuals who have attended the initial Level 101. The 201 courses of study will take place simultaneously with the 101 courses. \nThis two-track two level program has been created to provide valuable training from a faculty who are recognized as experts in their respective fields of patient advocacy\, drug development\, scientific and medical research\, communications\, regulatory/compliance topics\, non-profit governance and public policy. \nRegister for the 2019 PACT here \nDefinition of Tracks and Levels:\n Track I: Industry Level 101 Introduction: For individuals who work in the patient advocacy and life sciences function in the biotech/pharma or related industries. Individuals who wish to learn more about the patient advocacy function are encouraged to attend as well. Track I participants are encouraged to research\, design\, and implement a Capstone Project for enhanced professional development. \n Track II Patient Organizations Level 101 Introduction: For individuals in a senior management capacity or a member of the Board of Directors for a non-profit health patient advocacy organization (PAO). Also appropriate for individuals considering the formation of a PAO. Track II participants may complete a Reflection paper based on\ntheir PACT experience. \n Track I Industry Level 201 Intermediate: New in 2019\, only individuals who have taken Level 101 and work in the in the patient advocacy and life sciences area in the biotech/pharma or related industries may register for Level 201. There will be no exceptions made! A Capstone Project will be required for this level. \n Track II Patient Organization Level 201 Intermediate: New in 2019\, only individuals who have taken Level 101 and are in senior management capacity or a member of the Board of Directors for a non-profit health patient advocacy organization may register for this level. There will be no exceptions made! A Reflection paper will be required for this Level. \n  \nCurriculum Content\n  \nIntroduction Level 101 for Industry and Patient Organizations\nGeneral Session Course: for Tracks I and II Level 101 (Introduction) \n\nSanford Research: Who We Are; What We Do; presented by David Pearce\nDrug Development: An Overview; presented by Marlene Haffner\nIntroduction to CoRDS Registry; presented by Benjamin Forred\nEvolution of Patient Advocacy; presented by Jean Campbell\, Jayne Gershkowitz &\nBarbara Wuebbels\nFour-Legged Table: Industry\, PAO\, Research and Regulatory Relationships; presented by\nJayne Gershkowitz\, Terri Klein\, Barbara Wuebbels\, David Pearce\n\nTrack I: Industry Introduction Courses Level 101: \n\nPatient Advisory Boards; presented by Jayne Gershkowitz & Barbara Wuebbels\nBuilding Your Patient Advocacy Function; presented by Jill Dolgin\nHow to Best Approach Vendor Selection; presented by Patti Engel\nTelling Your Patient Advocacy Story; presented by Chris Smith\nUnderstanding Best Practices of Interacting with the Non-Profit Sector; presented by\nJean Campbell\nWhat is the ROI of Patient Advocacy?\nPublic Policy for Industry presented by Stephanie Fischer\n\nTrack II: Patient Advocacy Organization Introduction Courses Level (101): \n\nMaintaining a Viable Patient Advocacy Group: An Annual Check-up; presented by David\nLaGreca\nIntroduction to Rare Disease Public Policy; presented by Diane Dorman and Meg Leal\nReimbursement and Access to Drugs/Treatments; presented by Maria Hardin\nCommunication for Patient Advocacy Organizations; presented by Frieda Hernandez\nUnderstanding the Pre-Clinical and Clinical Trial Process; presented by Barbara Handelin\nWorking with Industry; presented by Terri Klein\nBuilding and Sustaining Non-Profit Relationships; presented by Meredith Grimm & Nancy\nHarris\nCoRDS Registry: For Non-Profit Organizations; presented by Austin Letchor\n\n\n\nIntermediate Level 201 for Industry and Patient Organizations\nGeneral Session Course: for Tracks I and II Level 201 (Intermediate): \n\nFour Cases Studies; presented by David La Greca\, Barbara Handelin & Robert Tomaino\nThe Cost of Drugs; presented by Douglas Paul\nCompliance and You; presented by Patrik Florencio\nWhat’s It All About: Epidemiology; presented by David Lapidus\nCapstone and Reflection Projects: An Overview; presented by Robert Tomaino\n\nTrack I Industry Intermediate Courses Level (201): \n\nBusiness Ethics\nPatient Reported Outcomes\nC-Suite: Patient Advocacy; presented by Robert Metz\nInternational Patient Advocacy\nPatient Advocacy Round Table; presented by Robert Metz\nExpanded Access\n\nTrack II Patient Advocacy Organization Intermediate Courses Level (201): \n\nStrategic and Board Planning\nInternational Relations: Non-profit Collaborations; presented by Sandra Heibel\nArt of Collaboration with Stakeholders; presented by Barbara Wedehase\nSuccessful Fundraising; presented by Jean Campbell\nSocial Media Challenges for PAOs; presented by Stephanie Fischer & Robert Tomaino\nYoung Adults in Leadership and Board Roles; presented by Rob Long & Seth Rotberg\n\n\nDistinguished Faculty for 2019 PACT\nDistinguished Faculty:  The Sanford/PPALS PACT Faculty is comprised of leading and well respected individuals who have a depth of experience and expertise in life sciences\, healthcare and rare diseases. \nJean Campbell\, Principal\, JF Campbell Consultants; Jill Dolgin\, PharmD.\, Head of Patient Advocacy\, AGTC; Diane Dorman\, Consultant \, Rare Disease Public Policy; Patti Engel\, President\, Engage Health; Stephanie Fischer\, Strategic Communications Consultant; Patrik Florencio\, Senior Vice President\, Global Chief Compliance & Risk Officer\, Amicus Therapeutics; Benjamin Forred\, Translational Research Project Manager\, Sanford Health; Jayne Gershkowitz\, Senior Vice President & Chief Patient Advocate\, Amicus Therapeutics; Meredith Grimm RN\, Clinical Operations and Patient Advocacy Consultant; Marlene Haffner\, MD\, MPH\, Principal & Founder\, Orphan Solutions and Haffner Associates; Barbara Handelin\, PhD\, Founder & CEO\, NovaKen; Maria Hardin\, Senior Advisor\, JF Campbell Consultants; Nancy Harris\, Principal\, Harris Consulting; Sandra Heibel PhD\, Chief Scientific Officer\, BioPharma Global\, Frieda Hernandez\, Vice President Business Development\, Continuum Clinical; David LaGreca\, Principal\, David LaGreca & Associates; David Lapidus\, President\, LapidusData; Meg Leal\, Esq.\, President\, MWL Consulting; Austin Letcher\, Senior Clinical Research Specialist\, Sanford Health; Robert Long\, Executive Director\, Uplifting Athletes; Rob Metz\, Sr. Vice President\, Global Business Operations and External Affairs\, Horizon Pharma; Doug Paul\, Partner & Vice President\, MME; David Pearce PhD\, Executive Vice President\, Innovation & Research\, Sanford Health; Seth Rotberg\, Partnerships Manager\, Inspire; Chris Smith\, President\, SmithSolve; Robert Tomaino\, Principal\, Orphan Communications; Barbara Wedehase\, MSW\, Principal\, BAW Consulting\, Barbara Wuebbels RN\, Board Chair & Co-Founder\, Professional Patient Advocates in Life Sciences\n(PPALS) \nDates:\nThe PACT course will be held May 6-9\, 2019 in Sioux Falls\, South Dakota. \n\nMay 6\, 2019: 6:00 pm: Evening Reception for all attendees at Club House Hotel and\nSuites (2320 S. Louise Avenue\, Sioux Falls\, SD 57106)\nMay 7\, 2019: 8:30 am to 4:00 pm: Levels 101 and 201\, Tracks I and II at Club House\nHotel and Suites (2320 S. Louise Avenue\, Sioux Falls\, SD 57106)\nMay 8\, 2019: 8:30 am to 5:00 pm: Levels 101 and 201\, General session; Track I and II\nworkshops at Sanford Research Institute (2301 E 60th Street North\, Sioux Falls\, SD)\nMay 9\, 2019: 8:30 am to 3:00 pm: Levels 101 and 201\, General sessions; Track I & II\nworkshops at Sanford Research Institute (2301 E 60th Street North\, Sioux Falls\, SD)\n\nTransportation will be provided between the Club House Hotel and Sanford Campus for courses\nheld on May 8th and 9th . \nRegistration: \nA unique element of the PACT course is that the course attendance for each level (101 and 201)\nis limited to 50 participants for each level for both (Tracks I (35) and II (15) combined.\nRegistration is on a first-come\, first-serve basis. Online registration is available through this link\nthrough May 1st: Register now \nRegistration fees cover the Welcome reception\, several meals during course\, refreshment breaks\, course\nmaterials and shuttle service to Sanford Research Institute campus from the Club House Hotel\nand Suites. \n Track I Level 101: $1\,300 for individuals working in an industry patient advocacy\nfunction or wishing to learn more about this function. This includes a PPALS annual\nmembership fee of $300. \n Track I Level 101 and 201: $950 for PPALS members whose membership is current. \n Track II Level 101 & 201: $250 for individuals in a senior leadership position for a non-\nprofit health organization (Executive Director\, Senior Staff person or Board of Directors\nChair or Co-Chair). \nThe deadline for course registration is Wednesday May 1\, 2019. \nLodging and Travel: \nHotel: We recommend reserving a room as soon as possible at the Club House Hotel and Suites\, 2323 S Louise Avenue\, Sioux Falls\, SD 57106. Please call 1-800-CLUBINN or 1-605-361-8700 to make your room reservations. Please inform hotel that you are reserving a room to attend the Sanford/PPALS PACT course.  The deadline for room reservations is April 5\, 2019. An alternative hotel (a sister property of the Club House) will be offered when the Club House room block is filled. \nRoom rates are $92 per night (plus tax) for Standard Q/Q; $92 per night (plus tax) for 1 Room Q/Q Suite and $122 per night (plus tax) for 2 Room King Suite. All rooms are based on 1-4 person occupancy. A complimentary deluxe continental breakfast available each morning. Shuttle bus service available for Sioux Falls Airport. \nTravel: Sioux Falls is serviced by Sioux Falls Regional Airport\, Joe Foss Field. \nContact Jean Campbell at 203-300-8964 or via email at jean@ppals.org for additional\ninformation. Thank you for your interest! \nRegistration Page
URL:https://ppals.org/event/sanford-ppals-patient-advocacy-certificate-training-pact-2019/
LOCATION:DC
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20180509T180000
DTEND;TZID=UTC:20180511T170000
DTSTAMP:20260530T214035
CREATED:20180207T084530Z
LAST-MODIFIED:20180407T051209Z
UID:249-1525888800-1526058000@ppals.org
SUMMARY:2018 PATIENT ADVOCACY CERTIFICATE TRAINING (PACT)
DESCRIPTION:PROFESSIONAL PATIENT ADVOCATES IN LIFE SCIENCES (PPALS) AND SANFORD RESEARCH ANNOUNCES the 2018 PATIENT ADVOCACY CERTIFICATE TRAINING (PACT)\nThe Sanford and PPALS’ PACT is an opportunity for individuals to enhance their professional development by enrolling in a comprehensive curriculum which focuses on increasing the competencies and expertise of patient advocates in the life sciences.  \nOver the course of two days\, attendees will receive valuable training from a faculty who are recognized as experts in patient advocacy\, drug development\, scientific and medical research\, regulatory/compliance\, communications\, non-profit governance and public policy.  The curriculum has been designed to address the professional development needs of: \n\nIndividuals who work in the health and life sciences arena (Track I)\nIndividuals in senior leadership positions for a non-profit patient advocacy organization (Track II)\n\nUpon completion of  PACT\, a Sanford/PPALS certificate will be awarded to all participants. Track I participants are encouraged to research\, design\, implement and successfully complete a Capstone Project for their professional development. Track II participants may complete a Reflection paper based on their experience. \nThis curriculum is designed at the Level 101 for individuals who have not participated at a previous Sanford/PPALS course of study. \nDates:   May 9 to 11\, 2018 (Wednesday through Friday) \nI. May 9\, 2018:  Evening Reception and Opening Session 6:00 pm\nII. May 10\, 2018: Track I & II Sessions  8:30 am CT to 5:30 pm CT\nIII. May 11\, 2018: Track I & II Sessions  8:30 am CT to 4:30 pm CT \nLocation of Course:   Sanford Research Institute\, 2301 E 60th Street North\, Sioux Falls\, SD  57104 \nRegistration for Course:  Online registration is available through Sanford Research \nDeadline for course registration is May 1\, 2018. \nRegistration fees: includes welcome reception\, lunches\, dinner\, refreshment breaks on Sanford campus and course materials. \nTrack I: Non PPALS Member: $1\,250 for individuals working in an industry patient advocacy function (this registration includes a PPALS annual membership valued at $300) \nTrack I: PPALS Members: $950 for current PPALS members working in industry as patient advocates in life sciences \nTrack II: $250 for individuals in a senior leadership position for a non-profit health organization (Executive Director\, Senior Staff person or\nBoard of Directors Chair or Co-chair). \nHotel: Reservations for rooms can be made at the Club House Hotel and Suites\, 2323 S Louise Avenue\, Sioux Falls\, SD 57106. Please call 1-800- CLUBINN; or 1-605- 361-8700 to make your room reservations.  Additional information will be provided soon. \nTravel:  Sioux Falls is serviced by Sioux Falls Regional Airport\, Joe Foss Field  http://www.sfairport.com \nCurriculum Content\nGeneral Sessions: Level 101 Track I & II \n\nDrug Development\nIntroduction to CoRDS Registry\nPatient Advocacy Evolution\nSanford: Who We Are; What We Do\n\nTrack I: Level 101 for individuals working in Industry \n\nBuilding Your Patient Advocacy Function\nClinical Trials and Patient Reported Outcomes\nHow to Best Approach Vendor Selection\nInteracting with Advocacy Organizations and Stakeholders\nPatient Advisory Boards\nPublic Policy: What is the role of industry in public policy?\nThe ROI of Patient Advocacy\nTelling Your Patient Advocacy Story\nUnderstanding the Best Practices and Challenges of Interacting with Non-Profit Sector\n\nTrack II: Level 101 for leaders of Patient Advocacy Organizations \n\nBuilding and Sustaining Non-Profit Relationships\nCommunication for Patient Advocacy Organizations\nCoRDS Registry for Patient Advocacy Organizations\nIntroduction to Rare Disease Public Policy\nMaintaining a Patient Advocacy Organization: An Annual Check-up\nPublic Policy on State and Local Levels\nReimbursement and Access to Drugs\nUnderstanding the Clinical Trial Process:\nWorking with Industry\n\nDistinguished Faculty:  The Sanford/PPALS PACT Faculty is comprised of leading and well respected individuals who have a depth of experience and expertise in life sciences\, healthcare and rare diseases. \n\nMax Bronstein\, Senior Director\, Health Policy & Corporate Affairs\, Audentes Therapeutics\nJean Campbell\, Principal\, JF Campbell Consultants\nArchana Chatterjee\, Head of Pediatrics\, Sanford School of Medicine\nGissoo Decotiis\, On Deputy Director\, Oncology Advocacy Relations – Bayer Healthcare\nJill Dolgin\, PharmD\, Head of Patient Advocacy AGTC\nDiane Dorman\, Principal\, DD Consulting\nPatti Engel\, President\, Engage Health\nMargie Frazier\, Executive Director\, Batten’s Disease Support & Research Foundation\nJayne Gershkowitz\, Chief Patient Advocate\, Amicus Therapeutics\nMarlene Haffner\, MD\, Principal\, Haffner Associates\, LLC\nBarbara Handelin\, Founder\, NovoKen\nMaria Hardin\, Senior Advisor\, JF Campbell Consultants\nNancy Harris\, Principal\, Harris Consulting\nDavid LaGreca\, Principal\, David LaGreca & Associates\nMeg Leal\, Esq.\, President\, MWL Consulting\nAustin Letcher\, Senior Research Associate at the Coordination of Rare Diseases at Sanford Research\nNita Patel\, RN\, Senior Director\, Professional & Patient Advocacy\, Amicus Therapeutics\nDavid Pearce PhD\, President of Research\, Sanford Health\, Director Children’ Health Research Center\nRobert Tomaino\, Principal\, Orphan Communications\nChris Smith\, President\, SmithSolve\nBarbara Wedehase\, MSW\, Principal\, Wedehase Consulting\nBarbara Wuebbels RN\, Co-Founder and Board Chair\, Professional Patient Advocates in Life Sciences.\n\nRegister Now
URL:https://ppals.org/event/2018-patient-advocacy-certificate-training-pact/
LOCATION:DC
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170509
DTEND;VALUE=DATE:20170512
DTSTAMP:20260530T214035
CREATED:20160916T225051Z
LAST-MODIFIED:20170613T003945Z
UID:170-1494288000-1494547199@ppals.org
SUMMARY:2nd Patient Advocacy Certificate Training (PACT)
DESCRIPTION:PROFESSIONAL PATIENT ADVOCATES IN LIFE SCIENCES (PPALS) AND\nSANFORD RESEARCH ANNOUNCES the 2017\nPATIENT ADVOCACY CERTIFICATE TRAINING (PACT)\n  \nThe Sanford and PPALS’ PACT is an opportunity for individuals to enhance their professional development by enrolling in a comprehensive curriculum which focuses on increasing the competencies and expertise of patient advocates in the life sciences.  \nOver the course of two days\, attendees will receive valuable training from a faculty who are recognized as experts in patient advocacy\, drug development\, scientific and medical research\, regulatory/compliance\, communications\, non-profit governance and public policy.  The curriculum has been designed to address the professional development needs of: \n\nIndividuals who work in the health and life sciences arena (Track I)\nIndividuals in senior leadership positions for a non-profit patient advocacy organization (Track II)\n\nUpon completion of  PACT\, a Sanford/PPALS certificate will be awarded to all participants. Track I participants are encouraged to research\, design\, implement and successfully complete a Capstone Project for their professional development. Track II participants may complete a Reflection paper based on their experience.  \nDates:  May 9 to 11\, 2017 (Tuesday through Thursday) \n\nMay 9\, 2017:  Evening Reception and Opening Session 5:00 pm CT\nMay 10\, 2017: Track I & II Sessions  8:45 am CT to 5:30 pm CT\nMay 11\, 2017: Track I & II Sessions  8:45 am CT to 5:30 pm CT\n\nLocation of Course:   Sanford Research Institute\, 2301 E 60th Street North\, Sioux Falls\, SD  57104 \nRegistration for Course: There is a limit of 60 participants for the entire program (Tracks I & II combined).  Online registration is available through this link:  \nhttp://www.sanfordresearch.org/cords/events/professionalpatientadvocatesinlifesciencescourseofstudies/ \nDeadline for course registration is May 5\, 2017. \nRegistration fees: includes welcome reception\, lunches\, dinner\, refreshment breaks on Sanford campus and course materials. \n\nTrack I: $1\,250 for individuals working in an industry patient advocacy function (includes a PPALS annual membership fee of $300)\nTrack II: $250 for individuals in a senior leadership position for a non-profit health organization (Executive Director\, Senior Staff person or Board of Directors Chair or Co-chair).\n\nHotel:  A block of rooms has been reserved at the Club House Hotel and Suites\, 2323 S Louise Avenue\, Sioux Falls\, SD 57106. Please call 1-800-CLUBINN; or 1-605-361-8700 to make your room reservations.  Refer to the Sanford/PPALS room block for the special rates of $92.00 (1-4 person occupancy) plus 9.5% Tax + $2.00 City Occupancy Tax. Inform hotel that you are reserving a room with Sanford/PPALS group http://siouxfalls.clubhouseinn.com/  Rooms need to be reserved by April 14\, 2017. \nTravel:  Sioux Falls is serviced by Sioux Falls Regional Airport\, Joe Foss Field  http://www.sfairport.com \nCurriculum Content \nGeneral Sessions: \n\nDrug Development\nIntroduction to CoRDS Registry\nPatient Advocacy Evolution\nSanford: Who We Are; What We Do\n\nTrack I \n\nBuilding Your Patient Advocacy Function\nClinical Trials and Patient Reported Outcomes\nHow to Best Approach Vendor Selection\nInteracting with Advocacy Organizations and Stakeholders\nPatient Advisory Boards\nPublic Policy: What is the role of industry in public policy?\nThe ROI of Patient Advocacy\nTelling Your Patient Advocacy Story\nUnderstanding the Best Practices and Challenges of Interacting with Non-Profit Sector\n\nTrack II (Patient Advocacy Organizations \n\nBuilding and Sustaining Non-Profit Relationships\nCommunication for Patient Advocacy Organizations\nCoRDS Registry for Patient Advocacy Organizations\nIntroduction to Rare Disease Public Policy\nMaintaining a Patient Advocacy Organization: An Annual Check-up\nPublic Policy on State and Local Levels\nReimbursement and Access to Drugs\nUnderstanding the Clinical Trial Process:\nWorking with Industry\n\nDistinguished Faculty (confirmed):  Jean Campbell\, Principal\, JF Campbell Consultants; Diane Dorman\, Principal\, DD Consulting; Patti Engel\, President\, Engage Health; Jayne Gershkowitz\, Chief Patient Advocate\, Amicus Therapeutics; Maria Hardin\, Senior Advisor\, JF Campbell Consultants; Nancy Harris\, Principal\, Harris Consulting; David LaGreca\, Principal\, David LaGreca & Associates;  Meg Leal\, Esq.\, President\, MWL Consulting;  Nita Patel\, RN\, Senior Director\, Professional & Patient Advocacy\, Amicus Therapeutics; David Pearce PhD\, President of Research\, Sanford Health\, Director Children’ Health Research Center; Chris Smith\, President\, SmithSolve;  Barbara Wedehase\, MSW\, Principal\, Wedehase Consulting;  Barbara Wuebbels RN\, Vice President\, Patient Advocacy\, Audentes Therapeutics. \nSANFORD/PPALS COURSE REGISTRATION\n 
URL:https://ppals.org/event/2nd-patient-advocacy-certificate-training-pact/
LOCATION:Sanford Center\, 2301 East 60th Street North\, Sioux Falls\, SD\, 57104\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20161027T080000
DTEND;TZID=UTC:20161028T170000
DTSTAMP:20260530T214035
CREATED:20160915T213412Z
LAST-MODIFIED:20160915T213857Z
UID:167-1477555200-1477674000@ppals.org
SUMMARY:4th Annual World Congress Summit on Patient Advocacy
DESCRIPTION:[vc_row type=”in_container” scene_position=”center” text_color=”dark” text_align=”left” top_padding=”25″ overlay_strength=”0.3″][vc_column column_padding=”no-extra-padding” column_padding_position=”all” background_color_opacity=”1″ background_hover_color_opacity=”1″ width=”1/1″][vc_column_text]\nPPALS will be attending and presenting at the 4th Annual World Congress Summit on Patient Advocacy\, October27-28\, 2016\, Arlington\, VA.\n[/vc_column_text][divider line_type=”No Line” custom_height=”15″][vc_column_text]About the Conference\nPharmaceutical and biotech companies all believe in representing the patient voice within the company. The challenge is how to make patient centricity an actuality within your organization. The paradigm shift in the healthcare industry to have a greater focus on the patient voice has created a need for industry organizations to ramp up their patient advocacy efforts to more successfully engage and empower what is most important; the patient. This summit brings together manufacturer and advocacy professionals to discuss how to most effectively engage the patient in drug development\, how to create successful partnerships\, and discusses strategies and results from successful case examples.[/vc_column_text][/vc_column][/vc_row]
URL:https://ppals.org/event/4th-annual-world-congress-summit-patient-advocacy/
LOCATION:Hyatt Arlington\, 1325 Wilson Blvd\, Arlington\, VA\, 22209\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20160922T080000
DTEND;TZID=UTC:20160923T170000
DTSTAMP:20260530T214035
CREATED:20160915T212641Z
LAST-MODIFIED:20160915T213724Z
UID:165-1474531200-1474650000@ppals.org
SUMMARY:Global Genes’ Patient Summit
DESCRIPTION:[vc_row type=”in_container” scene_position=”center” text_color=”dark” text_align=”left” top_padding=”25″ overlay_strength=”0.3″][vc_column column_padding=”no-extra-padding” column_padding_position=”all” background_color_opacity=”1″ background_hover_color_opacity=”1″ width=”1/1″][vc_column_text]\nPPALS will be attending and exhibiting at Global Genes’ Patient Summit\, September 22-23\, 2016\, Huntington Beach\, California\n[divider line_type=”No Line” custom_height=”15″]\nAbout Global Genes\nGlobal Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 \, with just a few rare disease parent advocates and foundations \, has since grown to over 500 global organizations.\n[divider line_type=”No Line” custom_height=”5″]\nGlobal Genes Mission\nTo Eliminate the Challenges of Rare Disease. \nWe build awareness\, educate the global community\, and provide critical connections and resources that equip advocates to become activists for their disease.[/vc_column_text][/vc_column][/vc_row]
URL:https://ppals.org/event/global-genes-patient-summit/
LOCATION:Hyatt Regency Huntington Beach Resort and Spa\, 21500 Pacific Coast Highway\, Huntington Beach\, CA\, 92648\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20160511T080000
DTEND;TZID=UTC:20160513T170000
DTSTAMP:20260530T214035
CREATED:20160504T015328Z
LAST-MODIFIED:20160506T023048Z
UID:128-1462953600-1463158800@ppals.org
SUMMARY:Patient Advocate Conference
DESCRIPTION:[vc_row type=”in_container” scene_position=”center” text_color=”dark” text_align=”left” overlay_strength=”0.3″][vc_column column_padding=”no-extra-padding” column_padding_position=”all” background_color_opacity=”1″ background_hover_color_opacity=”1″ width=”1/1″][vc_column_text]\nPatient Advocate Conference\nJoin us for the inaugural Professional Patient Advocates in Life Sciences Conference May 11-13 at the Sanford Center in Sioux Falls\, SD. This is a one-of-a-kind opportunity to learn the do’s and don’ts of the nation’s Patient Advocacy industry. \nThe conference allows those who work in the professional advocacy industry to learn how to create a better experience for patients who are navigating through the health care systems. \nThe conference will offer two tracks:[/vc_column_text][/vc_column][/vc_row][vc_row type=”in_container” equal_height=”yes” scene_position=”center” text_color=”dark” text_align=”left” overlay_strength=”0.3″][vc_column column_padding=”no-extra-padding” column_padding_position=”all” background_color_opacity=”1″ background_hover_color_opacity=”1″ width=”1/1″][vc_column_text]\nTRACK I:\nA PACT program for industry professionals in the health and life science arena. \nCost: $1\,000 \nAt the end of the conference\, attendees participating in Track I will be required research\, design\, implement and successfully complete a capstone project. During and after (via phone) the conference\, attendees will meet several times with a mentor (a member of the faculty teaching at this workshop)\, who will help guide\, support and assist in the capstone project. \nThe project is based on a real-life problem or issue related to the participant’s professional work in Patient Advocacy. It must be submitted within three weeks after the completion of the conference.[/vc_column_text][divider line_type=”No Line” custom_height=”25″][vc_column_text]\nTRACK II:\nA PACT program for individual Patient Advocacy who serve in a senior leadership capacity or as a member of the board of directors for a non-profit health Patient Advocacy group. \nCost: $500[/vc_column_text][vc_column_text]CONFERENCE AGENDA COMING SOON. \nConference facility:\nSanford Center\nDakota Room\n2301 E 60th Street N\nSioux Falls\, SD\nDirections:\nOff of I-229\, Benson Road Exit \nHotel accommodations:\nA block of rooms is reserved at the ClubHouse Hotel & Suites in Sioux Falls.\nPhone: (605) 361-8700 or (800) CLUB INN\nWebsite: siouxfalls.clubhouseinn.com \nCost: $92 per night + tax \nRSVP by: Monday\, April 11 (ask for the Sanford/PPALS block of rooms) \nThis conference was developed in collaboration between Sanford Research and CoRDS\, and Professional Patient Advocates in Life Sciences (PPALS). \nProfessional Patient Advocates in Life Sciences (PPALS) is a 501(c)(3) nonprofit organization committed to defining and advancing the function of Patient Advocacy within the biotech and pharmaceutical industries. \nSanford Research is a non-profit research organization and is part of Sanford Health\, an integrated health system headquartered in the Dakotas. Sanford Health is one of the largest health systems in the nation with a presence in nine states and four countries. More than $600 million in gifts from Denny Sanford has provided for an expansion of research initiatives in type 1 diabetes\, breast cancer and genomics in internal medicine.[/vc_column_text][/vc_column][/vc_row]
URL:https://ppals.org/event/patient-advocate-conference/
LOCATION:Sanford Center – Dakota Room\, 2301 E 60th Street N\, Sioux Falls\, SD\, 57101\, United States
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