Join the LGS Community Center

One Community. Many Ways to Get Involved. 

The LGS Community Center is our private online space where families, volunteers, advocates, and researchers connect, share support, and take action together. Unlike public platforms, it offers member-only groups, meetups, volunteer opportunities, and research collaboration—all designed to support and strengthen the LGS community.

👨‍👩‍👧 Private Support Networks

Four private groups with monthly meetups
Standing Together. Stronger Together. Support Group

A safe space to connect, share, and support one another. Meets monthly for open discussion.

Dad to Dad Support Group

Hosted by dads, for dads. Share experiences and encouragement in a supportive, male-led space.

Caregiver of Adults with LGS Support Group

Support for those caring for adults (and older teens) with LGS. Exchange advice and resources for long-term care.

LGS Grupo de Esperanza

Un espacio en español para familias hispanohablantes. Nos reunimos virtualmente cada mes para compartir y apoyarnos mutuamente. ¡Juntos somos más fuertes!

Join the LGS Foundation Community Center

🔬 LGS Collaborative Research Network

Families + researchers driving breakthroughs

Where patient families and researchers unite to advance LGS research beyond symptom control — toward treatments that target the root causes of the syndrome.

If you’re a researcher or a family expert, your perspective matters. Together, we are driving progress toward disease-modifying therapies and improved quality of life.

Submit a Request to Join the LGS Collaborative Research Network

💪 Get Involved: Volunteer & Advocate

Learn, lead, take action
LGS Volunteer Community

Volunteers power our mission — helping to create awareness, support families, and drive change locally and globally.

As a volunteer, you can:
  • Build community and raise awareness in your area
  • Advocate for LGS at the state and federal level
  • Share your story to educate and inspire others
  • Support others by sharing your caregiver journey and lived experience

  • Support campaigns and events that advance research and family support

Advocacy in Action

Join the Advocates for LGS, a powerful group of volunteers using their voices to influence change and secure better resources for the LGS community. Advocacy can happen anywhere — from your living room to your local legislature.

Submit Your Application to Join the Volunteer Team

Orientation and onboarding are provided through the LGS Community Center.

The LGS Community Center is made possible with support from our friends at:

Updated 11/26/25 (KK)

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