If you live with a rare disease or are a caregiver, it can be tough to get a pulse check on all that’s happening in the community. With thousands of rare diseases, advocates and other stakeholders are spread around the country – and the globe.
But the National Organization for Rare Disorders’ annual Breakthrough Summit, which kicks off October 15, brings patients and caregivers into the same room with industry leaders, researchers and government officials.
The three-day summit in Washington, D.C., curates an agenda packed with sessions of interest to the patient community. This year’s sessions include:
- The New Frontier of Gene Editing: Can We Potentially Cure Genetic Diseases?
- Harnessing the Power of AI: From Data to Diagnosis and Improved Outcomes
- Moving DEI From Good Intentions to Effective Action
The summit agenda also includes pediatric orphan drug development, mental health and non-traditional clinical trials. Attendees can participate in Q&As, lunch with peers and join roundtable discussions.
Participants who attended previous summits said they came away feeling educated and hopeful. Last year, caregiver Allaina Wellman compared the summit experience to a feast with plenty of leftovers because she learned so much about steering her advocacy organization, 17Q12 Foundation.