HD Advocacy


The HD Parity Act has been re-introduced in Congress on March 7, 2013, as HR1015. Please write to your respective U.S. Representatives and encourage them to sign on as co-sponsors!

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HD Parity Act Myths vs. Facts  This revised handout features an overview of what HDSA and advocates are hearing from Congress

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.

brief overview

 This document is a summary of the difficulties people with HD face when applying for SSDI and receiving Medicare that explains the need for the Huntington’s Disease Parity Act.



Advocacy - Huntington's Disease Society of America  

HDSA is engaged in efforts to protect the rights of our HD families, in addition to bringing into focus the difficult situations these families encounter to the attention of our federal, state and local elected officials through advocacy.  Educating elected officials and community leaders about the needs of those facing this devastating degenerative disease is one of the best tools we have at this time in the fight against HD.  Read how YOU can help! 

Map of Congress

click on for map of US to locate your state representatives

Take action:

E-mail your Senators and Representatives

See Latest: 

Legislative Priorities

Capitol Hill Basics

Tips on Telephoning & Writing & Emailing Your Representative including how to contact them  

Elected Officials

Get contacts for President & VP, US Congress, State and Local Officials

Issues & Action Alerts

Under this section, if you see something you want to write your congress representative on, you can put in your zip code to get information on them.

Bills in Congress

See what issues are currently being discussed in Congress

Votes In Congress

See what issues are currently being voted on in Congress

Government Department/Agency Search

Department of Health and Human Services - Including all names and contact info as well as agencies within this department such as: Centers for Medicare & Medicaid Services (formerly HCFA) and the ability to compose a letter to them on that site!

Mega Vote - Signup

Track your senators and representatives votes by e-mail!

Register To Vote

Begin by clicking the state in which you live, or use the menu below. You can then enter the information required by your state to register to vote. Once you have entered the required information, you will be able to print and mail your voter registration application (requires Adobe Acrobat: download). Note: Residents of New Hampshire, North Dakota, Wisconsin, and Wyoming are not permitted to use this form.  (Secure site)







**Used with permission from Jean Miller.  Source:  www.get-me.to/hdlinks**


If you have ideas for Huntington's Disease advocacy, feel free to contact Illinois Chapter Board Member  and Advocacy Chair, Tom Barr at Thomasabarr@aol.com