Family
Gestionando el viaje con su hijo complejo
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…
Leer másPrevención del agotamiento de los cuidadores: un taller sobre cómo desarrollar la resiliencia
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,…
Leer másNo diagnosticado
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…
Leer másCuidados poco comunes y desafíos con el cuidado personal: una discusión del DEE-P
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…
Leer másHigh-tech Options for Alternative Communication and Access within the Home
“High-tech Options for Alternative Communication and Access within the Home” is the fifth in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends…
Leer másLow-Tech/No-Tech Communication Systems for Children with Complex Communication Needs
“Low-Tech/No-Tech Communication Systems for Children with Complex Communication Needs” is the fourth in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends at…
Leer másUnraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone
“Unraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone” is the second in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends…
Leer másEquipos adaptativos y estrategias de terapia para niños con retrasos graves en el desarrollo
“Adaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays” is the third in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our…
Leer másUna descripción general de la hipotonía y cómo afecta el funcionamiento y el desarrollo generales
“An Overview of Hypotonia and How it Impacts overall Functioning and Development” is the first in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with…
Leer másPediatric Hospice Support & Care
This is a recording of the webinar “Complex Continual Care for those with living DEEs and their families,” which was held on November 30th, 2021. Pediatric hospice support is not…
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