Becky Abbott | NFED Advocacy Committee Co-chair National Foundation for Ectodermal Dysplasias
Alison Bateman-House, PhD, MPH, MA
Helena Baker | Rare Disease Nurse Network
José Bastos | Co-Founder & CEO | Knok Health
Lisa Bayha Deck, Rare New England
Bo Bigelow, The Disorder Channel
Allison D’Ambrosio Bones, T.E.A.M. 4 Travis
Tara Britt, Rare Disease Innovations Institute
Anne Bruns, Parent, Advocate
Marni Cartelli, Patient and Advocate
Jim Cavan, MS
Johnathan Dicks, Emergency RN
Nicholas Dryer, PharmD | Community Pharmacist
Sika Dunyoh | Associate Director, Patient Advocacy | Retrophin
Dr. Julie Eggington | Co-Founder & CEO | Center for Genomic Interpretation
Nahzi Forrest | Sickle Cell Advocate | Nahzi Thee Baker
Stephanie Fischer, Advocate
Stacey Feuer, PsyD, MLD | Patient Advocate, Speaker & Health Psychologist
Sean Gordon, Patient & Advocate
Bo Govea, Advocate and Parent
Megan Garlapow | Center for Genomic Interpretation
Dr. Femida Gwadry-Sridhar | CEO | Pulse Infoframe
Dr. Barbara Handelin | Founder & CEO, Audacity Therapeutics
Georgia Hart | Rare Revolution Youth Ambassador
Arme Hendriksz, FYMCA Medical Ltd.
Carole Herman | Rare Disease Parent Advocate
Corey Iqbal, MD, FAAP, FACS
Dawn Ireland, CDHI
Sumathi Iyendar, MD, Wiskott-Aldrich Foundation
Ilana Jacqueline, Author & Advocate
Gavin Jones | Director of Rare Disease | OPEN Health
Taylor Kane, Remember the Girls
Janet Kennedy, Spencer Health Solutions
Stacey Koenig, MSM, CCLS | Senior Director, Patient & Family Support Services, Children’s Mercy Hospital
Sivasangaran Kumaran, Rare Disease Advocate/Father of Swathi (Infantile Pompe) | Rare Disease Malaysi
Jenna Kucharski, Associate Director, Orchard Therapeutics
Anna Laurent | Everylife Foundation, YARR member
Cambria Lord, Youth Advocate
Eden Lord, The Dash Alliance
Jeff Lord, The Dash Alliance
Jennifer Marchesano, Nurse, Parent & Advocate
Craig Martin, Global Genes
Olivia Montano | PROS Foundation
Kevin Mott | Member, Board of Directors | NephCure International
Eddison Miller, Youth Advocate
Nicola Miller Gelati | Editor-In-Chief | Rare Revolution Magazine
Tracey Murray, RGN, DipEd Nursing | Rare Disease Nurse Network Trustee
Sharon Rose Nissley | Founder & Executive Director, Klippel-Feil Syndrome Freedom
Joyce Nortey, MPH, MSBH | Founder & Lead Advocate | Norkai Advocates
Neena Nizar, EdD | Founder & Executive Director, The Jansen’s Foundation
Cecile Ollivier | Chief Innovation and Regulatory Science Officer | Aparito
Carrie Ostrea | Executive Director and Co-Founder, Little Miss Hannah Foundation
Adrian Palau-Tejeda | Diversity & Inclusion Fellow | The Everylife Foundation
Effie Parks | Host | Once Upon a Gene Podcast
Allison Peck, Rare Disease Spouse, VCP
Jane Pedersen, PT, Duke University Hospital
Meghan Perry, Orchard Therapeutics
Laura Quinn | Managing Director, ASSAI Health Solutions
Luke Rosen, KIF1A.org
Scott Schliebner, MPH
Steve Silvestri | Policy Director, The Everylife Foundation
Dylan Simon, EveryLife Foundation
Claire Bidwell Smith, Grief Therapist
Holly Snyder | Board-Certified Genetic Counselor, Illumina
Dr. Lorna Speid, Ph.D., M.R. Pharm. S. | President of the Board of Directors, Putting Rare Disease Patients First!
Rebecca Stewart | CEO, Rare Revolution Magazine and Co-Founder & Trustee of Teddington Trust
Dr. Constantine Stratakis, NIH
Shira Strongin, Advocate
Meg Talley Dyer | Rare Disease Advocate & Parent
Tinn Tinn, Rare Disease Advocate and Performer, Zimbabwe
Trisha Torrey, Author
Angela Urbano | Founder & Executive Director | Blount’s Disease Strong
Siri Vaeth, CFRI
Monica Weldon, Advocate & CEO
Patricia Weltin | Activist & Citizen Scientist | Beyond the Diagnosis
Samuel Agyei Wiafe, MD, Clinical Psychologist
Kirsten Wilson, The Bulldog Educator Podcast
Congressman Kevin Yoder, Kansas