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 
• Contact Epilepsy Foundation's 24/7 Helpline for questions, resources, support and more - https://www.epilepsy.com/connect/247-helpline  
• Find a Level 3 or 4 Epilepsy Center for patients with refractory (don't respond to medications), severe, rare, complex, or early life epilepsies. 
• Ask about Genetic Testing - may be available for free via Behind the Seizure. 
• Know your risk for SUDEP and Get Trained in Seizure First Aid
• Epilepsy has many causes - learn more here - 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
• Compare information for seizures, medications, side effects, development and more across 1500 patients and 40 rare diagnoses.