HD Awareness

What is the Huntington’s Disease Advocacy Caucus?

Jennifer Simpson, Senior Manager of Advocacy and Youth Programs at Huntington’s Disease Society of America is leading the HD Advocacy Caucus.  HDSA San Francisco Bay Area Affiliate has one board member on the Caucus who reports to the SF Affiliate Board at the monthly meeting.

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 to care and/or improves the lives of people living with HD
  • Increase the number of legislators educated about HD and engaged with the HD Community
  • 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

We Can Never Lose HOPE……

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