2026 RARE Drug Development Symposium
SAVE THE DATE
September 9 – 11, 2026, Boston, MA
“Accelerating Rare Disease Progress: Aligning Advocates, Science & Industry”
The landscape of medical research is shifting: rare disease patient advocates are no longer just participants, they are the architects of discovery. Driven by an urgent need for life-saving treatments, these leaders are spearheading research initiatives with unprecedented momentum.
To support this movement, Global Genes, in partnership with Boston Children’s Hospital and the Termeer Institute, will be hosting the annual RARE Drug Development Symposium. Returning to Boston for its second year following a sold-out 2025 event, this 2.5 day symposium is specifically designed to equip advocates, industry leaders, and academic experts with the tools to navigate early-stage research with clinical precision and confidence. Attendees will have a mix of main stage sessions, targeted breakouts, group presentations, and hands-on workshopping. Whether you’re initiating research efforts or looking to refine your strategy, this symposium offers practical insights to accelerate progress in research strategies and activities.
Join us September 9 – 11, 2026 in Boston, MA, David Rubenstein Treehouse at Harvard University. Connect with leading experts and drive meaningful change in rare disease research.
David Rubenstein Treehouse
Harvard University
20 Western Ave, Boston, MA 02134
Have questions about the event or how to get involved? Email [email protected].
Agenda
Wednesday, September 9
from 8:30am – 7:00pm
(Evening Reception)
Thursday, September 10
from 8:30am – 7:30pm
(Evening Reception)
Friday, September 11
from 8:30am – 12:30pm
Included:
- 2 Keynotes
- 6 General Sessions
- Multiple Interactive Workshops
- Expert Office Hours
- Networking Opportunities
- Pitch Session Workshop
Registration Information
Registration will open in May!
Your registration for this in-person event includes the following:
- Event Sessions: Access to keynotes, general sessions & interactive workshops
- Meals: Enjoy breakfast, snacks and networking lunches
- Receptions: Attend the Welcome Reception & the Networking Reception
- Networking Opportunities: Ample opportunities to connect
| Attendee Type | Early Bird Rate Ends June 26, 2026 | Standard Rate After June 26, 2026 |
|---|---|---|
| Advocate / Caregiver / Patient | $225 | $295 |
| Academia / Government / Healthcare / Scientist / Researcher | $325 | $425 |
| Corporate / Industry | $1,995 | $2,295 |
Advocate Travel Support
Advocate Support is available to individual patients, close family and friends of advocates in the rare disease community, or staff (paid/volunteer) of rare disease nonprofit organizations or support groups.
Applications will open in April.
The Advocate Support Program is offered to offset the cost associated with attending the 2026 RARE Drug Development Symposium. Advocate Support will cover a portion of your meeting and travel expenses for the conference.
Plan Your Visit
Please note that there will not be a designated hotel for the 2026 event. All attendees are responsible for booking their own accommodations.
To assist with planning, we’ve compiled a list of recommended hotels in the area. Find a list of local hotels here. We encourage you to book early to secure your preferred location and rate.
Note: The venue, David Rubenstein Treehouse is located at 20 Western Ave, Boston, MA
The 2026 RARE Drug Development Symposium
owes its success to our valued Collaborators:
Thank You to Our Sponsors
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