Introducing the Lafora Clinical Network Registry

Chelsea’s Hope is proud to announce the launch of the Clinical Network Registry, a centralized resource connecting patients and families to trusted providers dedicated to Lafora disease care.

We are excited to announce the launch of the Chelsea’s Hope Clinical Network Registry, a new initiative as part of our Centers of Excellence project, dedicated to connecting patients and families with trusted providers who have experience or interest in treating Lafora disease.

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 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.

As we build this registry together, we hope to invite the community to help review and shape our standards of care, ensuring this network reflects the needs and experiences of those it supports.

Questions?

Whether you are a clinician ready to join or a family who knows a provider who should be part of this network, we would love to hear from you. Reach out to us at info@chelseashope.org. Thank you for your support of Chelsea’s Hope and your commitment to advancing care for Lafora patients.