Learn How to Maximize Your Data with The CRID
Join us for this 30 min webinar to learn more about the Clinical Research ID (aka The CRID™), a service that enables patients and parents (and their child/children) involved in…
Protecting Rare Access to Off-Label Treatments
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…
Programs to Help Care for Our Complex Kids – Inpatient and Outpatient
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…
Rare Caregiving: How to Ask for and Accept Help
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…
DEE-P Community Chat
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…
Bone Health for the DEEs
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.…
IEP Crash Course
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…
DEE-P Discussion – Life with an Undiagnosed DEE
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…
DEE-P Chat
Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.
Why EEGs Matter and What They Can Reveal
Have you ever wondered about the benefits of EEG readings that our children receive? Join us for an illuminating session with Dr. Jay Pathmanathan, MD from Beacon Biosignals, pediatric epileptologist…
Preventing Caregiver Burnout: A Workshop on Building Resilience
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,…
DEE-P Community Chat
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…