1. Learn what Lafora disease is

Start by understanding the basics. Knowing what symptoms to expect and how the condition typically progresses can help you feel more prepared to support your loved one.

👉 Read our Lafora Disease Overview

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2. Talk with your care team

Your neurologist will be an important guide. They can help manage seizures, monitor other symptoms, and connect you with specialists. In addition:

• Ask about genetic testing to confirm the exact mutation

• Request referrals for speech, physical, or occupational therapy

• Discuss what to expect over time

This conversation can be overwhelming, so consider bringing a list of questions and taking notes during your visit.

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3. Register for research

Joining a patient registry is one of the most powerful things you can do. It not only connects you with the latest updates, it also helps scientists move research forward faster.

👉 Join the Lafora Disease Clinical Registry (Madrid)

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4. Learn about treatments being studied

Although there is no cure yet, research is making exciting progress. New approaches are being explored, including:

• Antisense oligonucleotides (ASOs) – which may target the disease at the genetic level

• Repurposed drugs, like Metformin – already approved for other conditions

👉 View the Lafora Therapy Pipeline

By staying informed, you’ll be ready when new options become available.

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5. Connect with other families

You don’t have to do this alone. Many families understand exactly what you’re going through—and they’re here to support you.

There are several ways to get involved:

• Join our private caregiver network

• Attend monthly virtual meetups

• Become part of our Facebook Group

👉 Request to Join the Support Group
👉 Join the Facebook Group

Even a single conversation can make a world of difference.

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You’re not alone

As our founder Linda Gerber said:
“Together, we can maintain hope.”

And that hope starts now—with you, your loved one, and the growing Lafora community beside you.