Video
Managing the Journey with your Complex Child
In this conversation, you will meet Blyth Lord – mom to Cameron who had a genetic disorder and passed away at the age of 2. She is the Founder of…
Read MorePreventing Caregiver Burnout: A Workshop on Building Resilience
This workshop on on Building Resilience and Preventing Caregiver Burnout was held with an amazing mother daughter duo – STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…
Read MoreUndiagnosed
This DEE-P Discussion was recorded on September 13, 2023. During this DEE-P Discussion, we explore the experience of having a child with an undiagnosed rare epilepsy disorder. We discuss different…
Read MoreIEP Crash Course
This webinar was recorded on August 15th, 2023. The IEP process can be overwhelming and intimidating. In this session, Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, provides…
Read MoreRare Caregiving & Challenges with Self-Care – A DEE-P Discussion
This webinar was recorded on June 30th, 2023. Join us for this discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to…
Read MorePrograms to Help Care for Our Complex Kids – Inpatient and Outpatient
This webinar was recorded on June 7th, 2023. Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e.…
Read MoreProtecting Rare Access to Off-Label Treatments
This webinar was recorded on May 22nd, 2023. Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not “medically necessary”? Is coverage denied…
Read MoreLearn How To Maximize Your Data with The CRID
This webinar was recorded on April 28th, 2023. Watch to learn more about the Clinical Research ID (aka The CRID™), a service that enables patients and parents (and their child/children)…
Read MoreGI Issues and Neurodevelopmental Disorders
This webinar was recorded on February 13th, 2023. In this webinar, hear about GI issues such as reflux, feeding tubes, constipation, and more! Speakers: Russ Zwiener, pediatric GI doctor and KdVS…
Read MoreEpilepsy Surgery and Rare Genetic Epilepsies
Are you curious about when and why you should consider epilepsy surgery for your child with a rare genetic epilepsy or DEE? Our guests are: Dr. Ahmad Marashly, Medical Director,…
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