Rare Disease Week on Capitol Hill
Advocacy Stipend Application Deadline – January 26, 2026
Rare Disease Week on Capitol Hill NNPDF Advocacy Stipend
NNPDF is offering a limited number of $500 advocacy reimbursement stipends to help offset the cost for Niemann-Pick individuals, family members, or caregivers to attend Rare Disease Week on Capitol Hill in Washington, DC from February 24-26, 2026.
Why Rare Disease Week Matters
Rare Disease Week on Capitol Hill, organized by the Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is an annual event that empowers advocates to engage directly with Members of Congress. By bringing together patients and caregivers from across the country, the week provides a vital platform to learn about federal policy and share personal stories.
For the Niemann-Pick community, this is a valuable opportunity to stand together and educate lawmakers on the realities of living with the disease. Regardless of experience level, our advocates can use this dedicated stage to take action, drive awareness, and impact meaningful policy changes for our Niemann-Pick families.
Schedule of Events Overview
TUESDAY, FEBRUARY 24
Share Your Store Day & Welcome Reception
Share Your Story Day is a half-day session designed to help participants shape and share their personal experiences in impactful ways. The event features sessions led by community leaders, opportunities to connect with peers, and guidance on using personal stories to support advocacy and awareness efforts. The day concludes with the Rare Disease Week Welcome Reception, a celebratory gathering to officially launch the week and bring community members together.
WEDNESDAY, FEBRUARY 25
Legislative Conference & Rare Artist Gallery
The Legislative Conference equips advocates with a deeper understanding of the legislative process, current issues before Congress, and effective strategies for engaging with Members of Congress and their staff. The event also features the Rare Artist Gallery, offering attendees the opportunity to connect with and view artwork created by the 2025 Rare Artist Awardees.
THURSDAY, FEBRUARY 26
Hill Meetings with Members of Congress, Rare Disease Congressional Caucus Briefing, and Closing Reception
On Thursday, advocates participate in Hill Meetings with Members of Congress and their staff to share personal stories and discuss the impact of policy on the rare community. This is accompanied by the Rare Disease Congressional Caucus Briefing, where stakeholders and experts educate the public and staff on critical issues over lunch. The day concludes with a Closing Reception to celebrate the community’s advocacy efforts.
FRIDAY, FEBRUARY 27
Rare Disease Day at National Institutes of Health (NIH)
To raise awareness and foster collaboration, this event highlights the NIH’s commitment to advancing research and discovering new treatments for the rare disease community. The program features patient stories and scientific presentations to facilitate a vital dialogue between researchers, caregivers, and stakeholders. Rare Disease Day at NIH takes place at the Natcher Conference Center on the NIH Main Campus. Pre-registration is required.
Advocacy Stipend Information
The NNPDF Advocacy Stipend for Rare Disease Week on Capitol Hill supports Niemann-Pick individuals, caregivers, and families participating in RDLA Rare Disease Week events. A limited number of $500 reimbursement stipends are available to help offset travel and lodging expenses. Please note that participants are responsible for their own travel and accommodations.
NNPDF Stipend Requirements:
1. REGISTER HERE for Rare Disease Week on Capitol Hill.
2. Attend at least two of the following events:
- Tuesday, February 24: Share Your Story Day & Welcome Reception (2:00 – 6:00pm ET)
- Wednesday, February 25: Legislative Conference & Rare Artist Gallery (9:00am – 5:00pm ET)
- Thursday, February 26: Rare Disease Congressional Caucus Briefing (12:30-2:00pm ET)
- Friday, February 26: Rare Disease Day at NIH (attendance in-person required)
3. Submit a summary report of your experience at Rare Disease Week to be included in our newsletter and future NNPDF communications. Be sure to include some photos! Please submit to [email protected] by March 15.
How to Apply:
Deadline for applications is JANUARY 26, 2026
Recipients will be notified by January 28, 2026 and will receive their stipends upon completion of their Rare Disease Week stipend requirements.