REN Collaborators
Coalition of professional societies, patient advocacy organizations, and governmental agencies working to improve the lives of individuals living with epilepsy.
A collaborative of 50+ organizations dedicated to raising awareness for Infantile Spasms.
Resources for Families with Developmental & Epileptic Encephalopathies (DEEs).
List-serve for researchers, clinicians, advocates and industry with an interest in known genetic conditions which are associated with autism.
Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders.
Informal list-serve for leaders of organizations to share resources and advice.
An organization that develops transformative therapies using platform technologies that can be deployed across multiple rare diseases.
The Orphan Disease Center's JumpStart program serves to establish and progress research agendas in rare diseases.
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A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
Empower patients, build communities & drive forward momentum for rare disease globally.
Engages individuals, families and communities to transform health.
We do not speak for patients. We provide the training, education, resources and opportunities to make patient voices heard.
The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities.
Spread awareness of what a Seizure Action Plan (SAP) is; the importance of a SAP in the health management of those with epilepsy; and resources to develop an individualized SAP.
Improving Understanding of and Working to Prevent Epilepsy-related Mortality.