Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be updated on federal legislative issues, meet other advocates, and share their unique stories with legislators. Get prepared to participate in this year’s Ataxia Hill Day by attending this event. We strongly encourage advocates interested in participating in the Ataxia Hill Day on September 29, 2021 to attend this event to get informed about the issues, practice meeting with your Representatives, and become familiar with the App being used for both events. Registration is OPEN forRare Disease Week.
Rare on the Road - Beginning May 4
Since 2017, Global Genes and theEveryLife Foundation have partnered to host RARE on the Road events around the country, developing the next generation of advocacy leaders. RARE on the Road 2021 will consist of three virtual, state-specific meetings focusing on issues and resources relevant to residents in Nevada, Florida, and Illinois.Learn more here.
Military Members Wanted
NAF is making a special outreach to community members who either served in the US military or have a family member (spouse, parent, child, sibling, grandparent) who served. NAF is exploring a research program run by the Department of Defense and the possibility of adding Ataxia. If you have a connection to the military, your participation in thisquick survey could impact that effort
Support NIH Funding
Ask your Senators to support NIH funding. Funding for federal agencies, including those most important to rare disease patients is being decided on now in Congress. Research done by the National Institutes of Health (NIH) has led to some of the most exciting scientific discoveries as well as treatments for rare diseases. It is critically important to ensure that the NIH is well funded for future discoveries.
Senators Bob Casey (D-PA) and Richard Burr (R-NC) are circulating a "Dear Colleague" asking their fellow Senators to sign onto a lettersupporting robust funding for the NIH. Contact your Senator NOW and ask them to join the fight for strong NIH funding.
