Effie Parks, patient advocate
MP3•Bölüm sayfası
Manage episode 315205412 series 2922340
İçerik The Health Design Podcast and Moyez Jiwa tarafından sağlanmıştır. Bölümler, grafikler ve podcast açıklamaları dahil tüm podcast içeriği doğrudan The Health Design Podcast and Moyez Jiwa veya podcast platform ortağı tarafından yüklenir ve sağlanır. Birinin telif hakkıyla korunan çalışmanızı izniniz olmadan kullandığını düşünüyorsanız burada https://tr.player.fm/legal özetlenen süreci takip edebilirsiniz.
When Effie’s son, Ford, was born with an extremely rare genetic condition called CTNNB1 syndrome, she dove headfirst into the world of advocacy. CTNNB1 syndrome is caused by a deletion, partial deletion, or mutation of the CTNNB1 gene. It is a neurological condition that can cause a range of symptoms from mild developmental delays to severe physical and intellectual disabilities. To help herself and others cope with and manage raising a child with a disability or rare genetic condition, Effie started the Once Upon a Gene podcast. She shares her personal stories and interviews other parents, patients, advocates, doctors, scientists, and more.
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