Advocacy

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.

HDSA'S SSA ADVOCACY

Learn about HDSA's work to convince the Social Security Administration to recognize the non-motor symptoms of Huntington's disease.

Jimmo vs. sebelius

The Jimmo vs. Sebelius lawsuit ended the Medicare Improvement Standard.

Voices of HD

Voices of HD Click to read stories about individuals who are speaking up for HD.

 



HUNTINGTON'S DISEASE PARITY ACT ADVOCACY TOOLKIT


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.

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.

House Dear Colleague Letter Dear Colleague letter from Congressman Pascrell & Congressman Kinzinger

Senate Dear Colleague Letter Dear Colleague letter from Senator Gillibrand


H.R. 1015 House Bill Language: Huntington's Disease Parity Act of 2013

S. 723 Senate Bill language: Huntington's Disease Parity Act of 2013

Take Action : Click on the link to go to HDSA's E-Action Center!

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