Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not "medically necessary"? Is coverage denied because treatments that may work for you or…

Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e. ventilator), tube fed, etc. This is a medical…

Join us for a discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to care for ourselves but that can often seem…

Присъединете се към нас за възможност да се свържете с други родители/болногледачи и да разговаряте за нашия опит в отглеждането на деца с DEEs/редки епилепсии. Това ще бъде първата от нашите месечни възможности за...

Join us to learn more about the brain - bone connection. We are still learning but both epilepsy and anti-seizure medications (ASMs) are associated with adverse effects on bone health.…

School is just around the corner for many. It's a good time to revisit the world of IEPs Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, will join…

Come join us as we discuss the experience of having a child with an undiagnosed rare disorder. We’ll discuss different ways of navigating the experience, the challenges, and the benefits…

Присъединете се към нас за възможност да се свържете с други родители/болногледачи и да разговаряте за нашия опит в отглеждането на деца с DEEs/редки епилепсии.

Чудили ли сте се някога за ползите от показанията на ЕЕГ, които нашите деца получават? Присъединете се към нас за просветляваща сесия с д-р Джей Патманатан, MD от Beacon Biosignals, педиатричен епилептолог...

Preventing Caregiver Burnout: A Workshop on Building Resilience is brought to you by an amazing mother daughter duo - STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…

Join us for an opportunity to connect with STXBP1 mom and Social Worker Amelia Seraphia Derr and her mom, Susan Bourgerie, a psychologist, who led our session last week on…

Join us to learn more about Cortical Visual Impairment (CVI) from both caregivers and a teacher of the visually impaired in the rare epilepsies. You'll hear what CVI is, what…