• Rare epilepsy organization: Doose Syndrome Epilepsy Alliance (Myoclonic-astatic epilepsy)
  • Year formed: 2002
  • Lead point(s) of contact (name, position, email): Heather Jackson, heather@theroc.us
  • Organization mission/mission statement: Joining forces to create change

Rare Epilepsy Network

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Of the 65 million people living with epilepsy worldwide, a significant number have a rare form of epilepsy.

Though each syndrome is different, people living with rare epilepsies share many common seizure types, symptoms and side effects. However, because each syndrome's population is small in size, highly specialized rare epilepsy care is not readily available to every person who needs it.

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