Advocates for LGS

The Advocates for LGS are comprised of LGS community members who recognize the importance of the patient voice in advocating for government funding and support for LGS-related issues and causes. Advocacy can be done from the comfort of your own home, or in-person with local, state, and federal representatives. (Travel is optional).


Advocates for LGS:

  • Desire to learn, raise awareness, and share their LGS story with elected officials
  • Attend Rare Disease Week (RDW) on Capitol Hill
  • Participate in RDW activities
  • Participate in advocacy training
  • Meet with local, state, and federal representatives
  • Meet with other LGS Advocates as needed
  • Share advocacy calls-to-action with the LGS community

For more information about advocacy efforts or to join our team, please email

Upcoming Advocacy Opportunities:

Virtual Rare Disease Week on Capitol Hill 2022
February 22nd – March 2nd

Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. No prior experience is necessary. Registration for this event and all RDLA events are free for all rare disease advocates.

Learn More