Rare Disease Week on Capitol Hill brings together individuals and families affected by rare diseases to share their stories, connect with advocates, and raise awareness among lawmakers.
For the Niemann-Pick disease community, it’s an opportunity to advocate for better access to care, research, and treatments while making our voices heard.
During Rare Disease Week, participants can:
NNPDF is committed to helping families participate in advocacy opportunities.
A limited number of $500 reimbursement stipends may be available to help eligible individuals and families offset travel and lodging expenses.
Stipend availability and application details will be open on October 26th.
Advocacy is stronger when we work together. NNPDF supports the efforts of the RARE Foundation, whose RARE Advocates program hosts Rare Disease Week on Capitol Hill, bringing communities together to advance policies that improve the lives of people affected by rare diseases.
Through this shared commitment, we encourage Niemann-Pick families to raise their voices, connect with the broader rare disease community, and help drive meaningful change.
Meetings with legislators will take place in their office between 9 am and 5 pm. Please join us for additional activities on the Hill today.
Every story matters. Together, we can raise awareness of Niemann-Pick disease and help shape a better future for our community.
Become an NNPDF member for the latest research updates, event invitations, and a direct line to the community.
