Legislative issues can have an impact on both a local and national level. It is important to know the issues and to know who to contact on these issues. The following links include websites of organizations who advocate on behalf of those affected with diseases including ataxia as well as government officials and information on relevant laws for those living with ataxia.
- American Brain Coalition's Advocacy goal: to alleviate the burden of brain disease.
- Genetic Alliance – Call to action on current policy issues related to the genetics community.
- NORD’s advocacy initiatives for the Rare Disease Community
- Encourage your member of Congress to join the Rare Disease Congressional Caucus
- Rare Disease Legislative Advocates
Americans with Disabilities Act
Although the Americans with Disabilities Act (ADA) became federal law in 1992, many of us have little or no understanding of what it is. Click here to learn more about the details of the ADA.
- A guide to Disability Rights Laws
- Insurance Coverage for Pre-Existing Conditions
- Job Accommodation Network
- U.S. Dept. of Education's Office of Civil Rights: Protecting Students with Disabilities FAQ
- United States House of Representatives
- United States Senate
- US Department of Education Office of Special Education Programs
Legislative Action Alert
|The National Ataxia Foundation strongly opposes H.R. 1313. This bill will undermine decades of patient protections such as the Americans with Disabilities Act, (ADA) and Genetic Information Nondiscrimination Act (GINA) which forbids employers from requiring or requesting genetic testing. Fight with NAF to preserve your right to privacy and protection from workplace and societal discrimination. Speak out now! Write to your local representative and spread the word. If you would like your voice heard on this important issue, you may contact your local house and senate representatives to speak out against H.R. 1313.|
| To Track the Status of the Bill:
To Contact Local House Representative:
To Contact Local Senate Representative: