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 activities (virtual or in-person) on Capitol Hill
  • 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

Happening This Year: 

Advocacy 101 Training 

Individualized Educational Plan (IEP) Advocacy 

Happening Next Year: 

‘Talking to Your Healthcare Provider’ Training 

(more information coming soon) 

LGS Advocates Are Raising Their Voices

Six months after we took the nation’s capital by storm for Rare Disease Week on Capitol Hill, the LGS Advocates were at it again in their local communities as part of Rare Across America, organized and hosted by the EveryLife Foundation for Rare Diseases.

Rare Disease Week on Capitol Hill 2023, February 28nd – March 2nd

Six LGS caregivers joined efforts with the EveryLife Foundation for Rare Disease Week (RDW) on Capitol Hill. Our advocates learned about policy proposals impacting the rare community, shared their voices with members of congress, and networked with other rare disease patients and caregivers.

The Advocates for LGS Program is made possible with support from our generous partners:

Updated 08/21/2023