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What is the HD Advocacy Caucus?

 

Mission of the HD Advocacy Caucus: 

 

  • To engage and create more advocates in order to change public policy to improve the lives of individuals and families living with Huntington's disease (HD) at the Federal and State levels 

 

What do we do:

  •  
  • Raise awareness about HD-related legislation
  • Advocate for HD-related legislation by engaging with US legislators
  • Recruit, activate and train advocates

 


 

Goals: 

  •  
  • Pass legislation that facilitates access tocare and/or improves the lives of people living with HD
  • Increase the number of legislators educated about HD and engaged with the HD Commnity 
  • Advocate for HD-related legislation by engaging with U.S. legislators
  • Pass the HD Parity Act 

 


 

What are we working on:

  •  
  • Passing the Huntington's Disease Parity Act, advocating for increased access to telehealth services through the Covid-19 Pandemic, Strengthening GINA
  • Training and Engaging Advocates like you so you can engage your US legislators in the fight to improve the lives of individuals and families impacted by HD

FAQ

Frequently Asked Questions: 

 

Q) What is expected of me as a Caucus member? 
 
A)  Caucus members will meet every other Wednesday from 6-7pm EST to discuss progress in advocacy initiatives, Members of Congress to target for follow-up, engaging other community members in advocacy work, and next-steps on our Advocacy agenda. 
 
 
 
Q) What if I've never advocated before? Can I be a Caucus member? 
 
A)  Yes! You need passion, time, and an interest in talking about Huntington's disease and its impact on you, your family and your loved ones. You need to be willing to talk to not only your Members of Congress and State Legislators about HD, but your friends, family and other community members as well! 
 
Q) I'm not directly impacted by HD, can I join the Caucus? 
 
A) Absolutely. We always need allies in this work, and we need you! Whether you love someone impacted by HD, you work with folks impacted by HD, or you just want to make a difference, you can be a part of the HD Advocacy Caucus 

Ready to Join?