LGMD2C Patient & Family Community

Connect. Engage. Build the future together.

Living with Limb-Girdle Muscular Dystrophy type 2C (LGMD2C) can feel isolating — especially when families are spread across the world. The Dion Foundation is building a global patient and family community to foster connection, share verified updates, and empower families to engage in advocacy, storytelling, and fundraising efforts that move research forward.

This page outlines ways to get involved, at whatever level feels right for your family.

WAYS TO GET INVOLVED

💬 Join Our Private Online Family Forum

Our private Facebook group is a moderated space for LGMD2C patients, parents, and caregivers to connect with families worldwide, share lived experiences, and receive foundation-verified updates.

This group does not provide medical advice or clinical trial access.

Join the Private LGMD2C Family Forum

🌍 Apply to Join the Patient Community Board

For families interested in deeper engagement

Launching in 2026, The Dion Foundation’s Patient Community Board is a global, non-governing engagement program for patients, parents, and caregivers who want to help shape the future of the LGMD2C community.

Participation may include:

Providing community feedback and patient perspective
Supporting advocacy and awareness efforts
Participating in patient storytelling initiatives
Helping coordinate peer-to-peer fundraising
Joining Quarterly Virtual Town Halls (beginning Q2 2026)

Participation is optional, flexible, and separate from any clinical trial decisions or foundation governance.

Apply to the Patient Community Board

📧 Join Our Patient & Family Email Registry

Join our patient registry to receive research updates, community invitations, advocacy alerts, and foundation news.

This registry is used for email communications only and does not determine clinical trial eligibility.

Join the Patient & Family Email Registry

A Note on Safety & Transparency

The Dion Foundation does not provide medical advice
Participation does not guarantee clinical trial access
Research updates shared are public-facing and foundation-verified
All community spaces are moderated to protect families and privacy

Our goal is to create a trusted, respectful environment where families can connect and engage meaningfully.

FREQUENTLY ASKED QUESTIONS:

No. Participation in any Dion Foundation community program does not guarantee clinical trial access. Trial decisions are made by clinical investigators and care teams.
No. The online forum is for connection, support, and information sharing only. Members are not permitted to give or request medical advice.
No. All participation is optional and designed to be flexible. Families can engage at whatever level feels right for them.
Contact information is used only for foundation communications and community engagement. The Dion Foundation does not sell or share personal data.