Lafora Clinical Network Registry

A centralized resource connecting patients and families to trusted providers dedicated to Lafora disease care.

As part of our Centers of Excellence project, the goal of this registry is to identify clinicians who are committed to advancing the diagnosis, treatment, and holistic management of Lafora disease through coordinated care, patient advocacy, and collaborative expertise. The Lafora Disease Clinical Network will serve as a trusted, centralized resource connecting patients and families to providers with experience or dedicated interest in Lafora disease, ensuring access to knowledgeable, high-quality care.

We invite clinicians to join our network by completing the Clinician Application, where you can share your experience, areas of expertise, and how you would like to connect with patients and families. We also welcome referrals from patients, families, and fellow clinicians through our Referral Form, helping us identify providers who deserve a place in this growing network.

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Check back soon for the clinician map…

About the Lafora Clinical Registry

We Believe It Shouldn’t Be This Hard…

Finding a clinician who understands Lafora can be one of the hardest parts of navigating an already difficult diagnosis. That’s why Chelsea’s Hope is building a Clinician Network Registry. This network of trusted providers will serve as a centralized directory connecting patients and families worldwide to clinicians with experience or dedicated interest in treating Lafora. Our goal is simple: no family should have to search alone for the care they need.

The more clinicians we have in our registry, the more families we can support. If you know a provider who has cared for your loved one well or shown interest in Lafora, we would love to hear from you. Don’t hesitate to submit a clinician referral and help us build a community of care.

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Benefits of Being a Designated Clinician for Lafora Disease

  • Get Listed: Designated clinicians will have a dedicated profile on the Chelsea’s Hope website as part of our clinician network, showcasing their expertise, available services, and contact information so that patients and families navigating a Lafora disease diagnosis can find and reach the right provider.
  • Reach More Patients: Chelsea’s Hope will actively promote designated clinicians across community outreach efforts and through direct connection with newly diagnosed individuals and families to ensure providers are visible to those who need them most.
  • Join a Collaborative Network: Designated clinicians become part of a growing network of providers united by a shared commitment to improving outcomes for those living with Lafora disease. Regular network meetings, hosted by Chelsea’s Hope, offer opportunities to exchange clinical insights, refine care approaches, and build meaningful professional relationships.
  • Grow Your Patient Referrals: Membership in the registry positions clinicians as go-to resources for Lafora disease care, driving referrals from other healthcare institutions, patient advocacy organizations, and community members and broadening each provider’s experience with this rare condition.
  • Build Your Profile: Designation through Chelsea’s Hope signals a provider’s expertise and dedication to the Lafora disease community, strengthening their standing among peers in neurology, epilepsy, and the broader rare disease landscape.
  • Be Recognized as a Leader in Lafora Disease: Designated clinicians are acknowledged as pioneers in a field where expertise is rare and urgently needed. Through this network, providers shape the future of Lafora disease care by driving progress in treatment, education, and advocacy while becoming a cornerstone resource for patients and families worldwide.
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Frequently Asked Questions about the Clinical Network

The Lafora Clinical Network Registry is a centralized, trusted directory of providers with experience or a dedicated interest in Lafora, all accessible through our Chelsea’s Hope website.

Lafora is a rare and complex disease, and finding a knowledgeable clinician can be a difficult challenge a family faces after diagnosis. The Lafora Clinical Registry aims to address this difficulty by connecting families with trusted providers.

Clinicians apply to be listed. Once their application is approved, their profile will be made available to patients and families searching for care through our website.

There is also a referral option for families and other clinicians to share contact information for a healthcare provider they think should be listed.

Yes! Other rare disease communities have been able to accomplish exciting results with registries like this. 

According to the European Journal of Human Genetics:

  • More than 44% of rare disease patients report having delayed access to the most appropriate care, treatment, or surgery.
  • 36% report not being able to access appropriate care, treatment, or surgery.
  • 31% report receiving inappropriate care, treatment, or surgery.

The Everylife Foundation for Rare Diseases stated that in a recent survey, they found 39% of respondents needed to travel 60+ miles for care and 17% need to permanently relocate just to be closer to an expert that exists for their disease 

This registry aims to address this issue for the Lafora community and prevent delayed/inappropriate care. It will also help families find providers accessible to them physically or available for telemedicine.

Families, you can submit a referral for a clinician you trust via the Chelsea’s Hope Clinician Referral Form. Then, share the registry with other Lafora families in your network. 

Clinicians, you can apply to join the Registry here. Then, please help us spread the word so more clinicians and families can benefit.