Lafora Disease Resources

Educational, awareness, and patient support materials – all in one place.

Facing Lafora Disease can feel helpless and isolating, but we hope you can find information and support in this list of resources. We’re also including those from partner organizations and anything we believe could help you navigate living with Lafora Disease. We want to highlight Librarey – where rare disease families can find and share resources.

Please reach out to info@chelseashope.org if you have questions or suggestions about how we can best support the community.

Some listed resources contain links to third-party external sites where Chelsea’s Hope Lafora Children Research Fund has no responsibility for content or oversight of privacy practices. The Resources page will be continually updated.

Here’s what the icons before the Lafora Disease resources mean:

These are exclusive for those living with Lafora and will take you to another page on our site.

These are downloadable PDFs.

This links to another webpage.

Raising Awareness

Scientific Resources

123

Lafora Disease Research Roundtable Summaries

  • April 2024 Summary

    April 2024 Research Roundtable Summary

    Featuring guest speakers Luis Zafra-Puerta, Dr. Gentry, and Dr. Minassian

Family Support

Feeding Tube Support

Other Organizations

  • France Lafora

    French organization fighting Lafora Disease – vaincre la maladie.

  • A.I.L.A

    Italian organization fighting Lafora Disease – Associazione Italiana Lafora ODV.

  • Tempo Zero

    Italian organization fighting Lafora Disease – ODV TempoZero.

  • AEVEL

    Spanish organization fighting Lafora Disease – Asociación Española para Vencer a la Enfermedad de Lafora.

  • Angel Aid Cares

    ANGEL AID provides emotional support to families living with rare diseases, especially caregivers.

  • Courageous Parents Network

    Courageous Parents Network provides tools for parents and those caring for children with serious illness.

  • Patient Advocate Foundation

    Patient Advocate Foundation provides case management services and financial aid to Americans with chronic, life-threatening, and debilitating illnesses like Lafora.

  • Epilepsy Foundation

    Epilepsy Foundation has many resources about understanding and living with epilepsy, including this linked guide defining different types of seizures.