As you look for your next summer read, consider the inspiring stories of the rare disease advocates who will be leading sessions at the upcoming RARE Patient Advocacy Summit. From tales of diagnostic struggles to a powerful memoir about the chase to find a cure, these books will leave you inspired by the community you’re a part of and excited to connect in September.
Brain on Fire by Susannah Cahalan
In a raw and personal narrative, Summit keynote speaker, Susannah Cahalan tells the incredible story of her diagnosis and the terrifying road that led to it. Cahalan will be speaking to this story during her keynote session on Thursday, September 19 at 8:15 a.m. PT.
Chasing My Cure: A Doctor’s Race to Turn Hope into Action; A Memoir by David Fajgenbaum, MD
An aspiring doctor known for his superior athleticism on the football field, Dr. David Fajgenbaum’s life changed forever when he began experiencing inexplicable fatigue and came close to death. Since beating the odds and being diagnosed with Castleman disease, Dr. Fajgenbaum has identified his own treatment and dedicated his life to collaborating with others to advance rare disease research. Hear Dr. Fajgenbaum speak during the day two morning session of the Summit on September 20 at 8:15 a.m. PT.
Run to the Light by Laura King Edwards
When it seemed she had it all, Laura’s life came crashing down when her little sister was diagnosed with Batten disease. Hit with the crushing realization that she would watch her sister die, Laura set out to search for a cure and founded Taylor’s Tale to save children with the disease. Hear more about Laura’s advocacy experience in driving drug development at the Summit on Thursday, September 19 at 10:30 a.m. PT.
Shifting into High Gear by Kyle Bryant
“I’ll tell you what I’ve learned: Texas is big.” Join Kyle Bryant on two cross-country bike rides as he shares his story of pursuing adventure despite challenges. This story is a fresh reminder that even on our worst days, there can be purpose through pain. Get to know Kyle, the founder and director of rideAtaxia, and one-half of The Two Disabled Dudes, at the day one closing session at the Summit on Thursday, September 19 at 4:15 p.m. PT.
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