Katie is a seasoned communicator and patient advocate, applying her expertise to facilitate productive relationships with patient communities that advance business goals. As Executive Vice President, Managing Director at SmithSolve, she is responsible for creating and executing patient advocacy, education, engagement, and communication programs across clinical- and commercial-stage biopharmaceutical companies. She graduated with a B.A. in public relations from the S.I. Newhouse School of Public Communications at Syracuse University and received her Master of Business Administration degree from Montclair State University.

Jean is nationally recognized as one of the leading rare disease patient advocates with an impressive record of success in fundraising, patient advocacy and corporate relations. Jean served nearly two decades with the National Organization for Rare Disorders (NORD) in senior management positions including Vice President of Development. Under Jean’s leadership, there was significant expansion of several of NORD’s individual and organization membership programs along with the creation of NORD’s restricted research, medical meeting, organization mentor and clinical broadcast programs. Jean played a key role in the establishment of the NORD Corporate Council, and was instrumental in the creation and supervision of the disease specific Patient/KOL Regional meetings. A well-respected resource in the rare disease community, Jean formed JF Campbell Consultants LLC, in 2010. Her expertise in patient advocacy, organizational governance, corporate relations, patient assistance programs and program management is valuable to all size organizations. Her clients include non-profit health organizations, pharmaceutical and biotech industries. Jean’s goal is to increase a client’s visibility in the health industry as well as create productive partnerships, effective strategic planning, and optimal program development. In addition, Jean provides valuable mentorship to start-up and growing patient organizations helping to strengthen their infrastructure in order to better serve their mission, members and communities.
Jean is a co-founder and board member of the Professional Patient Advocates in Life Sciences (PPALS), a member of the Rare Collective and an Erdheim-Chester Disease Global Alliance Board Member. Jean also serves on MedunikCanada’s Advisory Board, Exceptional Parent Editorial Board, Sanford CoRDS’ External Advisory Board, National Caregiving Council Advisory Board, and Atlantic Research Group’s Scientific Advisory Board. Jean has served as a grant reviewer for Global Genes’ Innovation Grants, the United Way of Western Connecticut and the City of Danbury, CT. Somehow she manages to find time to spend with her two granddaughters, Madeline and Juliette, her daughters and son-in-law, Meredith and Aaron and Liz, family, and friends. Rumor has it that she attends ballroom dance classes and is an avid movie-goer!

Mary is a passionate advocate of patients with rare diseases and currently serves in a Patient Engagement/Account Management role at RARE-X, a collaborative platform for global data sharing and analysis to accelerate treatments for rare diseases. In this role, she brings years of experience in rare disease patient advocacy; strategic planning, marketing & communications; organization strategy & development; nonprofit leadership; and patient engagement. Previously, Mary established PatientVue, LLC, a patient advocacy consultancy, after spending several years on the NORD leadership team as Senior VP, Membership & Organizational Strategy. She led outreach to patient advocacy organizations and the biotech industry to accomplish mutual goals for the rare disease community.Mary has over 25 years’ experience in leadership positions at several global healthcare communications, including serving as President & CEO of PACE, a healthcare communications agency within the IPG (Interpublic Group) Network. In these positions, she led the strategic communications work for major biotech/pharma companies. Mary puts her passion for advocacy into action through her volunteer work. She serves as a Board member for the Foundation for Sarcoidosis Research, the Healthcare Businesswomen’s Association (HBA), and the Mayo Performing Arts Center. She holds an MS degree in Organization Development from American University in Washington, DC.

Chris is the Compliance Business Partner for the US business where he provides day to day Compliance guidance to all US Departments as well as Global Marketing and Global Clinical Development to ensure that all business activities meet legal requirements, regulations and guidance. Chris serves as the US Data Privacy Lead and is the Compliance representative on the IME Grants Committee, Investigator Initiated Studies Review Committee, Medical Research Review Committee and the Charitable Contribution Review Committee. Chris is also responsible for development of US specific Compliance related policies and develops and delivers training on various Compliance issues.

Gissoo DeCotiis is the Head of Global Advocacy for Daiichi Sankyo Cancer Enterprise. My role is to help the patient voice be heard in this global organization and help build strong relationships with our patient advocates around the world while creating broad awareness of the disease with decision makers and the public. For Daiichi Sankyo it is crucial to understand the real needs of the patients and to learn from their experiences in order to help build more relevant studies that will help patients live a longer and healthier journey.
I have over 30 years of experience in various industries with a Master’s Degree in Business (Finance). I joined Daiichi Sankyo in 2018 as Sr. Director of Global Advocacy in Global Medical Affairs and have been involved with all early and late stage assets for the organization.

Jill Dolgin, PharmD is a healthcare professional with over 20 years of global biopharmaceutical experience in Patient and Professional Advocacy, Medical Affairs and Healthcare Public Policy. Jill is currently the Executive Director, Global Head of Patient Advocacy at Applied Genetic Technologies Corporation (AGTC), a clinical-stage biotechnology company developing transformational genetic therapies for inherited retinal diseases. She leads the patient and professional engagement strategy to drive disease and clinical trial awareness efforts for the AGTC pipeline and is responsible for incorporating the voice of the patient throughout drug development and AGTC corporate culture initiatives. Jill holds a PharmD from the University of the Sciences at Philadelphia and a BS in pharmacy from The Ohio State University.

Britta is a rare disease patient living with primary lymphedema for over three decades,and is invested in empowering patients to be both participants and partners in the development of policies that impact their lives. As Senior Director of Communications and Marketing for the
EveryLife Foundation for Rare Diseases, she develops and executes nationwide strategies that inspire rare disease patients and caregivers to engage in advocacy to make their voices heard.

Prior to joining the Everylife Foundation, Britta served in leadership roles in government, including Deputy Chief of Staff for the Governor of Maryland, Director of Partnerships and Program Development for the Maryland Department of Labor, and Chief of Staff for the Prince George’s County Economic Development Corporation. She is a long-time advocate on behalf of the lymphedema community, earning the Outstanding Advocacy Award from the Lymphatic
Education & Research Network. For the last eight years, Britta has shared “advice, comfort, and positive thinking” on her blog, lymphedemadiary.com. She holds a Master of Public
Administration from Pace University. Britta lives in Arlington, Virginia with her husband and two very spoiled cats.

Tim has a background in nonprofit work having formerly run a nonprofit concert venue in CT. During his tenure he was responsible for repairing and restructuring the finances and operations at the Ives Center for the Performing Arts in Danbury CT, moving them from the brink of dissolution to a healthy operation. He currently lives in NYC where he works as consultant for pet related businesses. When he's not working he is spending time with the joys of his life, his two wonderful dogs Rebecca & Jacob.

David J. Eckstein, Ph.D., is the Program Director for Strategic Partnerships and Policy Development in the NIH Office of Clinical Research. He is responsible for oversight of the Bench to Bedside and Clinical Center Collaborative Research U01 Programs and is continuing his longstanding work on the Common Fund program, the Undiagnosed Diseases Network. Dr. Eckstein is also working to develop partnerships between the Clinical Center and nearby academic research centers and has helped develop policy documents around scientific review and resource prioritization for NIH clinical studies. Prior to joining the Office of the Director, he was a Health Scientist Administrator in the Office of Rare Diseases Research. During this time Dr. Eckstein initiated the first "Rare Disease Day at NIH" event in 2011 and led the planning for the first 7 annual events. He helped launch the NIH Undiagnosed Diseases Program and served as the point person for rare disease patient advocacy groups. Dr. Eckstein came to NIH in 1996 as a Technical Information Specialist in the Indexing Section of the National Library of Medicine. From 2000 to 2003, he served as a Program Analyst at the National Institute of Neurological Disorders and Stroke where, in addition to his analyst duties, he managed a portfolio of neuro-AIDS and prion diseases grants and contracts. After spending 6 months as a Congressional Fellow, working in a House member's personal office, Dr. Eckstein returned to NIH to serve as a Program Director in the Cancer Training Branch of the National Cancer Institute, managing a large portfolio of career development awards and individual and institutional training grants. During his time at NIH, Dr. Eckstein also has been selected to be an Excellence in Government fellow.

Dr. Eckstein received a B.S. in zoology and a B.A. in anthropology from the University of Maryland, College Park, and a Ph.D. in cell biology/

Dr. Eckstein is passionate about serving the research community, especially the rare disease community. Throughout his career he has served on many trans-NIH work groups, including several neurological and neuromuscular disease work groups. He has worked closely with patient groups, bringing them together with the relevant researchers, NIH program staff and industry partners to help move rare disease research forward collaboratively. His efforts in this area continue as he works to bring together local and regional academic research institutions and the NIH Clinical Center to help facilitate clinical research and training across area partners.

Patti has helped define the orphan drug market through her work spanning many disciplines and therapeutic areas. Over the course of her career, Patti has introduced successful strategies and created customized tools and databases to better understand the needs of rare disease communities.

As the principal and founder of Engage Health, Patti brings extensive experience in strategic planning, caregiver/patient identification and mapping, market research, market valuation, clinical trial recruitment, risk management and managed distribution for orphan drugs and specialty medical products. Patti also has significant experience in policy / governmental affairs and was creator of the Rare Disease Difference Maker™ project, which recognizes individuals who have made a difference in the rare disease space.

A frequent presenter on complex issues related to commercializing therapies for rare diseases, Patti led marketing and sales at Orphan Medical, Inc., and spent more than a decade in various sales and marketing management roles at 3M Pharmaceuticals. She has served as a member of the National Organization for Rare Disorder’s Corporate Council Advisory Group and Global Genes’ Corporate Alliance and sat on the advisory board for Raptor Pharmaceuticals and Kakkis EveryLife Foundation.

Patti is an R.N. with a background in pediatric oncology nursing and earned her Bachelor of Science in nursing and Bachelor of Arts in sociology from the College of St. Catherine, St. Paul, Minnesota.

As Vice President of Patient Advocacy and Communications at Horizon Therapeutics, Matt Flesch is responsible for leading programs and partnerships that help to build a more engaged patient community. This includes supporting the efforts of patient organizations who are working to raise awareness, provide education, ensure equitable access and advance the care of people living with rare, autoimmune and severe inflammatory diseases. In addition, Matt leads a Horizon team of communications professionals who work to elevate education and awareness, as well as create Horizon-specific programming to support patient communities (example: RAREis). For the past two years, Horizon has ranked among the top five in overall corporate reputation among nearly 50 pharmaceutical and biotech companies based on PatientView’s annual survey of 1,920 patient groups worldwide. Matt’s side hustle is volunteer work as a member of the Board of Directors for the Brain Recover Project Childhood Epilepsy Surgery Foundation, an organization that helps kids reach their full potential after up to half the brain is removed or disconnected to stop drug-resistant seizures.

Patrik Florencio is Senior Vice President, Global Chief Compliance & Risk Officer at Amicus Therapeutics. At Amicus, Mr. Florencio leads the Risk Management Department, which encompasses Corporate Compliance, Enterprise Risk Management, and Privacy, while also functionally overseeing the Quality Assurance Department. Prior to Amicus, Mr. Florencio held a number of chief risk positions, including Global Chief Compliance Officer of NPS Pharmaceuticals Inc. and Chief Corporate Compliance Officer, NA of Sandoz Inc. Mr. Florencio has also practiced health law at the law firm of Ropes & Gray in New York City, where he counseled pharmaceutical, hospital system, academic medical center, and other healthcare clients on a host of government enforcement, compliance, and regulatory matters. Mr. Florencio is also Part Time Lecturer at the Rutgers University Business School where he teaches “Legal, Regulatory, and Ethical Issues in the Pharmaceutical Industry,” a graduate level course. Additionally, Mr. Florencio is a frequent speaker at compliance and risk-related conferences as well as a speaker at Seton Hall Law School’s Compliance Certification Program. Mr. Florencio graduated with degrees in common law, civil law, and neuroscience from McGill University in Montreal, Canada.

Ben has worked in the field of biomedical research since 2009. He spent nearly seven years working in a laboratory that focused on endogenous protein antioxidant systems, and for several years focused his attention on mitochondrial redox systems in the context of Friedreich’s Ataxia. Currently, Ben is responsible for clinical trial start-up processes at Sanford Health. He also partners with pharmaceutical and biotech companies to collaborate on pre-clinical proof of concept animal and cell studies in rare disease model systems. Finally, Ben is the director of the CoRDS Registry program. He and the CoRDS team work to make an impact in the rare disease community by connecting patients with researchers and gathering valuable patient data.

Olivia Montaño is Senior Director, Program Management at Pathways for Rare and Orphan Studies. She has been in the clinical trials industry for over twenty years assisting rare disease focused biotech/pharma with data management and patient engagement services as well as assisting patient advocacy groups with registry and data discussions.
Olivia’s empowerment of others has been recognized by the Association for Women in Science and PharmaVoice 100. She is an active co-author to many chapters in the Society for Clinical Data Management’s Good Clinical Data Management Practices document and is a certified Clinical Data Manager.

Nita is a registered nurse with experience in clinical research, obstetrics and genetic nursing. She has been working at Amicus since September, 2011. Her expertise in lysosomal diseases was gained from managing a lysosomal treatment center for approximately 15 years at St. Peter’s University Hospital Institute For Genetic Medicine located in New Brunswick, NJ. Nita has also provided training and education for patients in renal failure receiving peritoneal dialysis, pre-natal teratology counseling and testing. Nita has also monitored clinical studies in lysosomal disorders; her passion is to advocate for patients and represent their voice to industry and drug development. Nita has been an Ambassador for Needy Meds; she continues to help patients with their needs to access the medical care they deserve. Since 2016, Nita has been a faculty member for Patient Advocates in the life Sciences (PPALS), she lectures on Patient Advocacy and “Return on Investment”.
Nita has completed midwifery training in London, UK; received Genetic Nurse Certification, Obstetric Nurse certification and Clinical Research certification.

Publications:
Understand Epidermolysis Bullosa from patient perspective: Bruckner A1, Murrell D2, Wisk J3, Losow M3, Patel N3, Reha A3, Lagast H3, Gault J4, Cantor E3, Gershkowitz J3

The Patient and Clinician Point of View: Living With Late-onset Pompe Disease: Patel N,1 Kishnani P,2 Sathe S,1 Dietze D,3 Jain V,1 Viereck C,1 Barth JA,1 Sitaraman S1

Regulatory strategies for rare diseases under current global regulatory statutes: a discussion with stakeholders
Andrew E. Mulberg; Christina Bucci-Rechtweg; Joseph Giuliano; David Jacoby; Franklin K. Johnson; Qing Liu; Deborah Marsden; Scott McGoohan; Robert Nelson; Nita Patel; Klaus Romero; Vikram Sinha; Sheela Sitaraman; John Spaltro; Vivian Kessler

Orphanet Journal of Rare Diseases

Doug has worked on a variety of initiatives for pharmaceutical and medical technology companies, including marketing strategy, pricing strategy, pricing research, management/analysis of forecasts, market assessments, and product acquisition assessments. His recent research and consulting work has included orphan drug pricing and perceptions of off-label prescribing. Prior to joining MME, he served as Vice President of Marketing for a medical device firm. He has been active at the national level with multiple pharmacy associations. He received a PharmD and a PhD in pharmaceutical marketing from the University of Mississippi. He currently holds an adjunct appointment as Assistant Professor at the University of Mississippi School of Pharmacy.

David Pearce is President of Innovation, Research, & World Clinic for Sanford Health. He completed his undergraduate Bachelor of Science Degree with honors in biological sciences at Wolverhampton Polytechnic in 1986. He gained his PhD in 1990 at the University of Bath, UK, and did postdoctoral training at the University of Rochester, U.S., and Oxford University, UK.

Dr. Pearce has been researching Neuronal Ceroid Lipofuscinosis (Batten disease) since 1997. His research has led to the first clinical trial for Juvenile Batten disease. He has published over 100 research papers on Batten disease. He also oversees a national registry for rare diseases known as the Coordination of Rare Diseases at Sanford (CoRDS). He has served on numerous NIH review committees, has organized rare disease workshops for the National Institute for Neurological Disorders and Stroke (NINDS) arm of the National Institutes of Health (NIH) and is currently the chair of the consortium assembly for the International Rare Diseases Research Consortium (IRDiRC).

As President of Innovation, Research, & World Clinic at Sanford, he oversees the development of research programs, including more than 450 researchers, eight research centers and more than 300 ongoing clinical trials.

Michele Rhee is Head of Global Advocacy Relations and Patient Engagement at Savara Inc. She has more than a decade of experience leading patient affairs and advocacy across pharmaceutical and nonprofit industries. Michele is embedded within the rare disease and oncology patient communities through both her extensive professional work and her personal experience with a cancer diagnosis at age 20 and rare disease diagnosis at age 21. Partnering with these communities, she has led patient interviews/advisory boards and represented the patient perspective, which has directly informed trial design, patient support services, and disease education programs, among other efforts. Michele previously served as Head of Patient Affairs at Enzyvant where she helped build the Patient Affairs function, developing and maintaining both global patient advisor and advocacy partnerships across disease areas. During her time there, the company was nominated for a Global Genes 2019 RARE Champions of Hope award, in part, due to its expanding efforts in Patient Advocacy. Prior to her work at Enzyvant, Michele served as Global and R&D Patient Advocacy Lead at Takeda Oncology, Head of Global Patient Affairs at Bluebird Bio, and Director of both Strategic Initiatives and Program Initiatives at the National Brain Tumor Society. In addition, Michele has served as Chair of the MassBio Patient Advocacy Roundtable since 2017, is a member on the Massachusetts Rare Disease Advisory Council, is a founding board member for Costs of Care, an organization dedicated to helping clinicians and health systems deliver better care at lower cost, and was named a 2019 PharmaVOICE 100 honoree. Michele received her MPH from Yale School of Public Health and her MBA from Yale School of Management.

Jamie Ring has over 20 years of patient advocacy experience in the life sciences and is the founder of Jamie Ring Advocacy Consulting, an independent advocacy consulting firm. She most recently served as the Head of Patient Advocacy at Spark Therapeutics, a leader in the field of gene therapy. In her role, Jamie was responsible for creating the patient advocacy function and led activities related to Spark’s disease areas of interest. She initiated and sustained corporate engagement in the Inherited Retinal Disease space where she supported the launch of the first FDA approved gene therapy for a genetic disease, Luxturna. Prior to joining Spark, Jamie spent 10 years at Genzyme where she most recently had served as the Vice President of Patient Advocacy and Humanitarian Programs – Rare Diseases. In that role, Jamie provided strategic oversight of all advocacy programming and led the global advocacy function in addition to managing external partnerships related to Genzyme’s global humanitarian programs. Prior to Genzyme, Jamie worked at Biogen supporting patient programs for both the Multiple Sclerosis and Non-Hodgkin’s Lymphoma disease communities. Additionally, Jamie worked at the ALS Therapy Development Institute as the Associate Director of Programs, responsible for ALS disease awareness initiatives and fundraising campaigns. In 2013, Jamie was voted by PharmaVoice magazine as one of the 100 most inspiring leaders in the pharmaceutical industry.
Jamie holds a B.A. in Sociology from Union College, Schenectady, NY and a M.P.H. in Social & Behavioral Sciences from Boston University. Jamie serves on the Board of Directors for the National Tay Sachs and Allied Diseases Association and is on the advisory board for the BU School of Public Health Pharmaceutical Certificate Program.

Michelle Slattery has more than 20 years of agency advocacy relations and healthcare communications experience, starting in oncology on behalf of Bristol-Myers Squibb and Genentech and most recently, working with biotech companies focused on treatments for rare diseases. In 2019, she launched Slattery Health Communications to meet client needs at the intersection of advocacy relations and clinical trial recruitment. Ask Michelle about her recent work producing patient videos, moderating virtual patient advisory boards, researching strategies for improving diversity in clinical trials, and helping clients win internal advocates for their patient advocacy vision and approach. You can also ask Michelle about her evolving Wordle strategy or life in Kansas City with three teenage daughters.

Chris has more than 25 years of experience in healthcare communications, including leadership positions with global pharmaceutical, biotechnology and public relations firms. As an expert in rare disease communication, he knows how to address the scientific, medical, clinical, social and economic aspects of orphan drug development. His work spans more than a dozen biopharma companies, and includes patient advocacy support, patient panels, patient meet-ups, media relations, investor events, patient days, talent acquisition, clinical trial recruitment, corporate branding and website development, pipeline communications, data announcements, and more. Chris has worked across diverse therapeutic categories and has represented many of the world’s leading healthcare companies, including Alexion, AstraZeneca, Johnson & Johnson, Pfizer and Sanofi. He is a founding member of the Rare Collective®, a group of trusted independent advisors in orphan drug development.

Rob is writer and editorial consultant with a specialty in rare diseases. For more than 20 years, he has provided editorial support and guidance to medical institutions, voluntary health organizations and pharmaceutical and biotechnology companies. Additionally, he provides strategic consultation on patient advocacy topics to industry and the nonprofit sectors.

Rob’s extensive experience and style of writing on rare diseases and disorders assures that both individuals and physicians are provided a clear understanding of rare diseases. During his tenure as the Managing Editor at the National Organization for Rare Disorders (NORD), Rob oversaw the development and expansion of the NORD Rare Disease Database as well as interacted with rare disease experts to ensure that each report was medically peer reviewed. His understanding of the unique needs of the rare disease community serves as the impetus to foster better communication and understanding between these diverse groups and the industry representatives that work with them.

Rob has worked for several years with JF Campbell Consultants to help facilitate the relationship between patient communities and pharmaceutical companies and provide guidance to these organizations on a wide variety of educational and business activities.

Rob has helped to mentor fledging nonprofit patient advocacy organizations, oversee grants programs, and written news articles that have appeared in magazines or websites including Exceptional Parent magazine and WebMD. Rob has also worked as an editorial consultant at the Leukemia & Lymphoma Society and currently serves as Managing Editor to RareShare, a rare disease community run by Rare Genomics.

Dr. Jill Weimer is a developmental neuroscientist who serves as the Senior Director of Therapeutic Development at Sanford Research in Sioux Falls, South Dakota. Jill serves as an interface between basic biomedical research and clinical research to promote bench to bedside science. Additionally, she will serve as a liaison to foster relationships with outside businesses, pharmaceutical companies and biotech industries. Jill holds a doctorate degree from the University of Rochester and completed post-doctoral fellowship training at the University of North Carolina before joining the faculty at Sanford Research 7 years ago.

Barbara Wuebbels serves Chairman and co-founder of the Professional Patient Advocates in the Life Sciences organization. She has over 20 years of experience working with patients, patient organizations and clinicians in the rare disease community. In 2018 she established her own consulting business. She is currently the Vice-President of the Battens Disease Support and Research Association board.