Ივენთი

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…

Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies. This will be the first of our monthly opportunities to…

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…

შემოგვიერთდით სხვა მშობლებთან/მზრუნველებთან დაკავშირების შესაძლებლობის მისაღებად და ისაუბროთ ჩვენს გამოცდილებაზე DEE-ით/იშვიათი ეპილეფსიით დაავადებული ბავშვების აღზრდის შესახებ.

ოდესმე დაფიქრებულხართ თუ რა სარგებლობა მოაქვს ჩვენს შვილებს EEG კითხვის შესახებ? შემოგვიერთდით ნათელ სესიაზე ექიმ ჯეი პატმანათანთან, Beacon Biosignals-ის ექიმთან, პედიატრიულ ეპილეპტოლოგი...

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…