1. Sharing your personal story about how HD has affected your life and family.
2. Asking elected officials to support our efforts to improve access to
treatment, medical care and to find a cure.
Huntington's Disease Parity Act (H.R. 1015/S. 723)
Raise Your Voice for HD Parity! Click on the link to take action
Learn More Click on the link to learn about the challenges that individuals with HD currently experience when applying for Disability, and waiting for their healthcare during the Medicare Waiting Period.
H.R. 1015 Cosponsors Click here to see who is cosponsoring H.R. 1015
S. 723 Cosponsors Click here to see who is cosponsoring S. 723
HD Parity Act Toolkit Click for documents you can download.
Healthcare Reform Advocacy
Insurance Marketplaces & Essential Health Benefits Click on the link to learn more about Healthcare Reform implementation and advocacy opportunities to speak up for HD care as part of the Federally-mandated Essential Health Benefits package.
Voices of HD
Voices of HD Click to read stories about individuals who are speaking up for HD.
Congressional Meeting Request Language This document provides suggested language for requesting House and Senate meetings about the Huntington's Disease Parity Act
Myths vs. Facts: Huntington’s Disease Parity Act of 2013 This revised handout features an overview of what HDSA and advocates are hearing from Congress and provides tips on how to respond
Tips for a Successful Meeting: This document outlines how you can meet with Congress locally about the Huntington’s Disease Parity Act, as well as what to say in your meeting.
Huntington’s Disease Parity Act Fact Sheet: This document is brief overview of the need for the Huntington’s Disease Parity Act.
Costs Associated with the Huntington’s Disease Parity Act: This document provides an estimate of the costs associated with the Huntington’s Disease Parity Act using Congressional Budget Office (CBO) criteria.
Medicare Pyramid This document shows how HD is unique, and illustrates why individuals affected by HD should have the waiver of the 24 month Medicare waiting period.
House Dear Colleague Letter Dear Colleague letter from Congressman Pascrell & Congressman Kinzinger
Senate Dear Colleague Letter Dear Colleague letter from Senator Gillibrand