Epilepsy Foundation Alabama
Ilene Penn Miller, the parent of a son with a rare epilepsy and national Rare Epilepsy Advocate, describes rare epilepsies and how to navigate a rare epilepsy diagnosis. Learn about the increasing number of rare epilepsies, the common diagnostic odyssey, and resources. Links: * Find organizations with information, support, community and more for rare epilepsies - https://www.rareepilepsynetwork.org/members-partners [http://goog_769637225/] * Contact Epilepsy Foundation's 24/7 Helpline for questions, resources, support and more - https://www.epilepsy.com/connect/247-helpline [https://www.epilepsy.com/connect/247-helpline] * Find a Level 3 or 4 Epilepsy Center [https://www.epilepsy.com/connect/find-epilepsy-specialist/find-epilepsy-center] for patients with refractory (don't respond to medications), severe, rare, complex, or early life epilepsies. * Ask about Genetic Testing [https://www.epilepsy.com/learn/epilepsy-due-specific-causes/genetic-causes-epilepsy/genetic-testing-and-epilepsy] - may be available for free via Behind the Seizure [https://www.invitae.com/en/behindtheseizure/]. * Know your risk for SUDEP [https://www.epilepsy.com/learn/early-death-and-sudep/sudep] and Get Trained in Seizure First Aid [https://www.epilepsy.com/living-epilepsy/seizure-first-aid-and-safety] * Epilepsy has many causes - learn more here - https://www.epilepsy.com/learn/epilepsy-due-specific-causes [https://www.epilepsy.com/learn/epilepsy-due-specific-causes] * Learn more about Rare Epilepsy Registry - https://www.epilepsy.com/about-us/research-and-new-therapies/engagement/access-rare-epilepsy-network-registry [https://www.epilepsy.com/about-us/research-and-new-therapies/engagement/access-rare-epilepsy-network-registry] * Compare information for seizures, medications, side effects, development and more across 1500 patients and 40 rare diagnoses.
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