Lawmakers, agencies, and industry leaders listen when families speak up – and every email, meeting, and story adds weight to the case for faster diagnoses and more treatments for Niemann-Pick disease.
Here are the current ways to get involved.
Members of Congress and state legislators respond to constituents. A short, personal message about how Niemann-Pick disease has affected your family can carry more weight than a form letter.
Not sure what to say? See our Advocacy Tools page for talking points and a sample email or call script.
Statistics inform policy. Stories change minds. When a legislator, journalist, or researcher hears directly from a family living with Niemann-Pick disease, it puts a face on the data.
You don’t need a polished speech; the most effective stories are simple and honest. Consider:
With your permission, NNPDF may use your story in letters to the FDA, in conversations with legislators, or during Niemann-Pick Awareness Month and other campaigns. You always choose how it’s used.
Nothing is open for public comment or sign-on right now.
Sign up for advocacy alerts and we’ll notify you the moment something opens — these windows are often short.
Every February, NNPDF families have the opportunity to meet directly with lawmakers during Rare Disease Week on Capitol Hill.
Advocacy opportunities open and close quickly — comment periods, hearings, and sign-on letters often have short windows.
Want to see what NNPDF has already done on your behalf?
Become an NNPDF member for the latest research updates, event invitations, and a direct line to the community.
