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
Medunik Canada’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!

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.

Tiffany Cummings-Damiani joined Amicus Therapeutics in May 2024 as the Vice President, US Ethics and Compliance. In her role, she works closely with Marketing, Sales, Patient Services, Patient and Professional Advocacy, Medical Affairs and other internal functions, partnering with a proactive, solutions-oriented approach. Tiffany has close to 20 years’ experience in compliance and commercial compliance operations. Tiffany has held leadership roles at Insmed Inc, Teva Pharmaceuticals and Shire Inc. Key accomplishments including building the compliance program at Insmed and preparing and leading the efforts for Shire and Teva for their Corporate Integrity Agreements and Deferred Prosecution Agreements. Prior to these roles, Tiffany worked at several medical education/communications agencies supporting pre-launch and launch activities for various pharmaceutical companies. Tiffany received her master’s in business administration – Marketing and Management, from LaSalle University, Philadelphia PA and her Bachelor of Arts in Communication – Corporate Communications and Public Relations, from Elizabethtown College, Elizabethtown PA.

Gissoo 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 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.

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/anatomy from the University of Texas Graduate School of Biomedical Sciences in Houston.

Dakota received her BA in biology from Bryn Mawr College in 2011 and a Familial Adenomatous Polyposis (F.A.P.) diagnosis shortly after. Between her F.A.P. and desmoid tumor diagnoses, statistically speaking, she's four in a million. Patient advocacy fills the void left by her cancerous colon and her job title. As Global Patient Advocacy Associate Director at BioCryst Pharmaceuticals, she ensures that the voices of rare patients and the non- profits that serve them are heard. She’s the co-founder of Young Adult Cancer Connection which hosts Cancervention, Philadelphia’s first young adult cancer conference, and the creator of F.A.P.ulousTV, the first YouTube Channel dedicated to discussing F.A.P.

Colette is a clinical research leader with over a decade of experience spanning laboratory science, clinical trials, and translational research. As Program Manager at Sanford Research, she oversees strategic initiatives in translational science, supporting faculty-driven research, regulatory compliance, and cross-sector partnerships. Colette plays a key role in managing IRB processes, data workflows, and the development of innovative studies that bridge basic science with patient care. She holds a Master of Public Health and is a certified clinical research professional, recognized for her collaborative leadership and commitment to advancing health through research.

Jayne joined Amicus Therapeutics in 2006 and serves as Chief Patient Advocate, responsible for developing and executing the global strategies that ensure people living with rare diseases and their families remain at the core of all company operations. A long-time patient advocacy professional, Jayne leads the company’s highly regarded Global Patient & Professional Advocacy department, a function that ensures extraordinary patient dedication as the bedrock of Amicus since its earliest days as an R&D organization. Jayne founded the company’s Patient Advisory Boards program, which helps give voice to the concerns of patients, families, and caregivers, and leads Amicus’ Public Policy work to advocate for policies that satisfy unmet needs among those living with rare diseases, and initiated Healing Beyond Disease™, an Amicus initiative to further serve the rare disease community in extraordinary ways. She is a member of the company’s Executive Committee, reporting directly to the CEO, and sits on the board of directors. In February of 2019, Jayne received the second annual “Heart of BioNJ” Award in honor of her selflessness and dedication to patients in the rare disease community, and her renown role as a trailblazer in Patient Advocacy. She is a 2018 PharmaVOICE 100 honoree, recognized for providing inspiration and innovation in the life sciences industry. She is a member of the Boards of Trustees of BioNJ and of the Healthcare Institute of New Jersey and is a co-founder and vice chair of the board of Professional Patient Advocates in Life Sciences (PPALS). Jayne is the former executive director of National Tay-Sachs & Allied Diseases Association. A native of Medford, Massachusetts, Jayne graduated from Syracuse University with a dual degree in Newspaper Journalism and English Literature and studied marketing management at Radcliffe College. She and her husband, Bruce, reside in Lambertville, NJ; they have two adult children.

Polly Gill is the Associate Project Manager for the Coordination of Rare Diseases at Sanford (CoRDS). She has been working in the healthcare system for almost 10 years in various roles at Sanford. Polly works with advocacy groups/partners to build questionnaires and works closely with the participants in CoRDS.

I discovered my passion for health care, patients and cancer care at a young age. Over the years my focus has been to work in a variety of roles on the healthcare team including the clinical setting, drug development for industry, facilitating health information and being a strong advocate for patients. These experiences have afforded me a broad and deep view into the health care delivery system’s capabilities as well as the unmet patient needs relative to life changing, chronic illnesses. Using my nursing background as a foundation, I have held positions and provided leadership in clinical nursing, clinical research and drug development, medical affairs, health information, and patient and professional education. While attending a post graduate program in health coaching at Georgetown University I learned to communicate using motivational interviewing, a style of communication which is less authoritarian, and focuses on a more self-directed approach. Using open, non-judgmental communications, this
technique empowers the patient to make positive choices resulting in beneficial life changing behaviors. This method of communicating opened my mind to a less directive and more personalized approach to patients, all health care stakeholders and even my personal life!

Following a 23-year tenure as vice president of patient services at the National Organization for Rare Disorders (NORD) where she created a track record of success building, implementing, and managing over forty sustainable Patient Access Programs for Copay Assistance, Insurance Premium relief, and assistance with Travel expenses experienced by patient and families participating in clinical trials; as well as advising pharma/biotech industries in developing sound Expanded/Early Access programs for experimental therapies. Maria continues to work in the rare disease arena as Senior Advisor with JF Campbell Consultants offering valuable services and expertise in understanding OIG Oversight Compliance, Medicare/Medicaid changes, Co-pay Accumulators and other current issues to the pharma/biotech industries involved in developing therapies for orphan diseases; and to non-profit health organization that can assist in fulfilling their individual missions, making good governance decisions, and finding appropriate connections on which to build relationships with the biotech and pharmaceutical industries. She has advised and served on the faculty of Professional Patient Advocates in Life Sciences (PPALS) since its inception in 2016.

As the founder of The 90-10 Institute Dr. Handelin continues her commitment to transformation of the biotech industry toward maximizing health for the public writ large. She is a 40-year veteran entrepreneur and molecular medical geneticist who has been a pioneer in responsible application of genetics to clinical medicine. Over the last decade, she has turned from technology innovation to redesigning the business and financing of her beloved industry, culminating in the establishment of The 90-10 Institute. Dr. Handelin has served on the board of Directors at RedPath Integrated Pathology, Inc., NeutoPointDX/Stemina. She is currently serving on the Board of Transformative Bio, LLC. She has also served on scientific advisory boards of several genomics companies (e.g. EXACT Sciences). Agent for Social Change: Dr. Handelin served on a variety of federal committees and advisory panels on ethics in genetic testing, including the Secretary’s Advisory Panel on Genetics, Health and Society. For the interest of Human Subjects Protections, she served for 10 years at Public Responsibility in Medicine and Research (PRIM&R). As cofounder of BioPontis Alliance, LLC and BioPontis Alliance for Rare Diseases, a 501c(3) has pushed innovation for translating more good science into good medicine.

Nancy is a nationally recognized patient advocate with more than three decades of experience creating, leading, and directing patient organizations focused on rare diseases. Nancy views patient advocacy from many perspectives. She has been actively involved in many national organizations as a board member, an advisor and a leader at NORD, Global Genes, Child Neurology Foundation, WE MOVE , and the Best Pharmaceutical for Children's Act committee. She has been a consultant to the pharmaceutical industry for over 20 years but most importantly, she was the mother of a child with a devastating undiagnosed neurological disorder. Nancy brings a unique combination of empowerment and empathy to her work with patients, their families and caregivers, and the scientific communities. Her goals range from creating awareness and education, to assisting patient support programs and promoting the overall strategy to offer the best possible patient care. Nancy resides in California where she is a peer counselor, working with people in all areas of transition.

Having spent over 10 years at the United Mitochondrial Disease Foundation, Anne is well versed in the inner workings of patient advocacy organizations (PAOs) and the intersection of their unique challenges with the needs of industry. Anne utilizes her strong background in project management and extensive experience developing and implementing programs with various vendors and biotech/pharma partners to support patients and families. As the Research Project Director at Engage Health, she provides a wealth of experience and ability to bring together key stakeholders and drive action into success.

Alyssa Mendel graduated from the University of South Dakota with her Bachelor of Science degree in Psychology. She went on to graduate school to obtain her Master of Arts in Counseling degree from the Sioux Falls Seminary. Prior to coming to Sanford Research, Alyssa worked at the University of San Diego California as a research associate in neuropsychiatry. Alyssa has been with the Coordination of Rare Diseases program at Sanford Research for the last nine years and serves as the project manager. In addition, she works as a part-time therapist specializing in eating disorders at Carroll Counseling Services based in Sioux Falls, South Dakota.

Olivia 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 of-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.

Michelle 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

Erin Slattery has communications experience across the healthcare sector, including biopharma, biotech, government agencies, professional associations, and nonprofit organizations. In 2019, Erin joined Slattery Health Communications. On behalf of several rare disease biotech clients, she is currently gathering patient insights via patient advisory board meetings, surveys, and patient interviews, and working to amplify the impact of patient advocacy with a push to publish patient insights at medical meetings. Erin is also leading the development of clinical trial patient materials for several global rare disease studies, using health literacy best practices to share information in an easy to understand, transparent way. Erin is dedicated to amplifying the voices of people living with rare diseases and sharing their stories to inform the drug development process. She’s eager to share insights from moments that shaped her career—like the patient advisory board meeting that transformed the course of a drug program, or her work on making clinical trial materials more patient-friendly. Oh, and if you like football, ask her about her speechwriting for the commissioner of the NFL.

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.

Amanda joined Amicus in 2018 to support Patient & Professional Advocacy (P&PA) their Fabry program. She quickly shifted and became a key player on the cross-functional Pompe Team, driving patient-focused initiatives and fostering collaboration. Now, as the Associate Director and Global Pompe Lead for the P&PA program, Amanda is dedicated to advancing patient-focused drug development and post-marketing programs, raising disease awareness, and serving community needs. She co-chairs the Disability and Rare Advancement in the Workplace (DRAW) resource group, breaking down barriers for individuals with disabilities in the workplace. Amanda is also a certified mental health first aid member, supporting the well-being of Amicus employees. With a master's degree in social work and extensive experience in healthcare, Amanda has worked in various clinical settings, providing behavior management, case management, and mental health support for individuals with chronic health conditions. Her background includes therapeutic services for group home residents with a history of trauma, abuse, neglect, and chronic medical issues. Amanda currently lives in New Jersey, where she was born and raised, with her family and two fuzzy golden doodles, Jackson and Missy. As a family, they enjoy taking walks, swimming, and spending time outdoors when the weather is nice. Amanda is passionate about supporting other women during their fertility journeys, having led online support groups to provide empathy, resources, and information for women and families in need across the globe. She also loves a good romance or fantasy novel!

Rob is a 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 with 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. He has helped to mentor fledgling 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 has directed the science arm of Amicus Therapeutics since June 2019, first as the Senior Vice President of Discovery Research and Gene Therapy Science and more recently as the Chief Science Officer. Dr. Weimer is a developmental neuroscientist by training and started her academic research program at Sanford Research and the University of South Dakota in 2009 as Assistant Scientist/Assistant Professor, focused on the molecular mechanisms mediating development of the cerebral cortex and how disruption in these processes can lead to a whole host of neural pediatric disorders, including Batten’s disease and Neurofibromatosis Type 1. Work in Dr. Weimer’s lab led to the first ever gene therapy trial programs for CLN3 and CLN6 Batten disease. Today she plays a unique dual role, holding leadership positions with both Amicus and Sanford Research, serving most recently in the role of Senior Director of Therapeutic Development and Scientist at Sanford. Dr. Weimer grew up in north central Missouri and moved to upstate New York where she received her bachelor’s degree and Ph.D. in neuroscience from the University of Rochester. She completed her postdoctoral training in the Neuroscience Research Center at the University of North Carolina in Chapel Hill with a focus on developmental neuroscience. Dr. Weimer also serves as a scientific advisor to a number of rare disease foundation as well as serving as the President of the Alumni Council for her alma mater, the University of Rochester School of Medicine and Dentistry.

Barbara serves as 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.