RARE-X will be hosting its inaugural Exchange Forum in San Diego, CA, this September. The Exchange Forum supports patient organizations and advocates with insights, introductions, and next steps in their research-driving journey.
The summit will run from Wednesday, September 14 at 4:40pm to Thursday, September 15 at 12:45pm at Town & Country Hotel, San Diego (following the Global Genes Patient Advocacy Summit).
Town & Country Hotel
500 Hotel Cir N, San Diego, CA 92108
RARE-X Patient Advocate Partner Organizations will have the opportunity to send two representatives from each organization to attend.
There is no cost to attend the forum. Any travel and lodging costs will be the responsibility of the attendee. Global Genes & RARE-X secured a discounted room rate for the Forum. Click here to book your room.
Questions, please email email@example.com.
Moderator: Morrie Ruffin, AAIH
Ryan Colburn – Pompe Patient and Innovator
Stacie Calad-Thompson – BioSymetrics
Robert Deans – Synthego
Kirk Lamoreaux, Cogenticity and Report Author
Wendy Erler, Global Advocacy, Alexion Astra Zeneca Rare Disease, RARE-X Board Member
Charlene Son Rigby, RARE-X CEO
Wendy Erler, Global Advocacy, Alexion, RARE-X Board Member
Betsy Bogard, FOP Advocate, Ensoma, RARE-X Board Member
Julia Vitarello, Batten’s Advocate
Moderator: Walt Kowtoniuk, RARE-X Board Chair, Third Rock Ventures
Luke Rosen – Founder KIF1a.org
Tim Yu – Boston Children’s, N=1
Sarah Glass – nLorem
Chris Hart – Creyon Bio
Presenter: Charlene Son Rigby, RARE-X
Case Study: Collaborative Research Network Commission for Complex Copy Number Variants
Moderator: Vanessa Vogel Farley, RARE-X
Yssa DeWoody, Ring14 USA
Bina Shah, Project 8p
Scott Demarest, Colorado Children’s
Rachel Groth, BridgeBio
Karmen Trzupek, RARE-X
Wendy Chung, Columbia & Simons Searchlight