Represent OCNDS on Capitol Hill in 2027
The CSNK2A1 Foundation is heading back to Washington, D.C. for RARE Disease Week on Capitol Hill, March 2–4, 2027, hosted by RARE Advocates, a program of the RARE Foundation.
We are inviting U.S.-based parents, grandparents, siblings, and caregivers to apply to represent the OCNDS community, share their family’s story, and help make sure the voices of OCNDS families are heard by lawmakers.
RARE Disease Week brings rare disease advocates from across the country together to learn about policy issues affecting the rare disease community and
meet directly with Members of Congress and their staff. Participants receive advocacy training, policy education, and resources through RARE Advocates. The CSNK2A1 Foundation will help our OCNDS families prepare, coordinate, and advocate together throughout the experience.
Four Foundation-Funded Travel Spots Available
The CSNK2A1 Foundation will select four U.S.-based OCNDS family representatives to receive Foundation-funded travel support for the event.
For selected participants, the Foundation will cover approved airfare, hotel, and reasonable meal expenses for March 2–4, less any travel scholarship or reimbursement funding received through the RARE Foundation or other eligible programs.
To be considered for Foundation-funded travel support, families must meet the Foundation’s eligibility requirements, including participation in key OCNDS research and data programs. Full eligibility requirements are included in the application.
Not Eligible for Funding or Not Selected? You Can Still Participate.
Families who are not selected for one of the four Foundation-funded spots — or who do not meet the funding criteria — are still welcome to participate in RARE Disease Week. The CSNK2A1 Foundation is happy to provide nonfinancial support, including OCNDS advocacy materials, preparation, and coordination with our broader advocacy group.
No Advocacy Experience Required
You do not need previous advocacy experience. We are looking for community members who are willing to learn, participate fully, share their story, and help represent the broader OCNDS community.
Participants must be available for required pre-event webinars and preparation sessions and remain in Washington, D.C. through the conclusion of activities on March 4 at 5:30 PM.
Important Dates
- September 21 – November 6, 2026
RARE Foundation Travel Reimbursement application window - November 20, 2026
CSNK2A1 Foundation application deadline - No later than December 20, 2026
Applicants notified of Foundation selection decisions - January 6, 2027
RARE Foundation RARE Disease Week registration opens - March 2–4, 2027
RARE Disease Week on Capitol Hill
Important Travel Reimbursement Deadline
If you are applying for one of the four Foundation-funded travel spots, you must apply for the RARE Foundation Travel Reimbursement between September 21 and November 6, 2026.
Do not wait to learn whether you have been selected by the CSNK2A1 Foundation. The RARE Foundation reimbursement deadline occurs before the Foundation’s selection process is complete.
Ready to Apply?
If you would like to use your voice for OCNDS on Capitol Hill, we encourage you to apply.
Our Foundation applications close on November 20, 2026.