Batten disease, or Neuronal Ceroid Lipofuscinosis (NCL), is a rare, fatal inherited disorder of the nervous system and has no cure. There are 13 known forms of Batten disease, and it is estimated that 2-4 births per 100,000 in the U.S. are affected. 

The removal of key experts at Health and Human Services Agencies along with recent executive orders on federal funding and public health agencies, and proposed cuts to Medicaid will have a devastating and lasting impact on programs vital to thousands of rare disease communities.

This year for Rare Disease Week, we are asking the community to join us in sending a pre-written letter to your congressional representatives, urging them to help prevent the proposed cuts to Medicaid, further cuts to these crucial federal health agencies and funding, and to support the Rare Pediatric Disease Priority Review Voucher (PRV) Program.

We invite you to fill in the information below to reach out to your representatives and share our efforts on social media. Watch the tutorial below for instructions. 



About BDSRA: Batten Disease Support, Research, and Advocacy Foundation (BDSRA) funds research for treatments and cures provides family support services, advances education, raises awareness, and advocates for legislative action.