Register for Symposium!

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Chelsea’s Hope Lafora Children Research Fund and the Lafora Epilepsy Cure Initiative are happy to announce the return of our in-person Annual Lafora Disease Science Symposium.

The deadline to register to attend in person has passed, but virtual registration will remain open!

Click here for more details and the registration form

This conference is ideal for families affected by Lafora, researchers, healthcare professionals, and our industry partners.

You will hear from caregivers, clinicians, researchers, and pharmaceutical representatives on therapeutic development and diagnosis progress. We will also have an optional session for caregivers.

Date: September 26th – 27th, 2022.

Details: Attend virtually from anywhere in the world!

Check out our agenda outline for the event!

Virtual attendees must also register online.

New article about rare disease community

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Read the full article here

Though we face different fights, rare disease families take similar journeys to save their children. Other families affected by rare diseases like Lafora are starting companies to help develop treatments for their children. We are grateful to partner with Vibe Bio in our efforts to find and fund a cure for Lafora disease. 

#RAREis Global Advocate Grant Awardee

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Read more here

We’re excited to announce that we’ve been selected as a #RAREis Global Advocate Grant awardee! We look forward to continuing to make a positive impact in our rare disease community by using this grant to increase education and awareness around Lafora Disease.  

We’re proud to be selected and look forward to expanding our education and awareness programs. We’re grateful to Horizon Therapeutics for their recognition of our efforts to support the Lafora Disease community.

Clubhouse Podcast

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Listen to Alok Tayi and Joshua Forman discuss their company Vibe Bio and their fight against rare disease on the Gene Fixers podcast.

We are glad to partner with Vibe Bio!


Listen here