Random Raredisease Podcasts

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time – I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Categories: Kids & Family, Society & Culture

Tags: advocate, caregiver, disability, genetherapy, genetics, inclusion, parenting, raredisease, rarediseasepodcast, raredisorder, SpecialNeeds, specialneedspodcast, wholeexomesequencing

A podcast focusing on biotechnology and its promise to transform the lives of people living around the world with rare and serious diseases. During each episode, we explore a topic related to biotechnology and rare disease by interviewing doctors, scientists, patients, family members of people with rare or serious diseases, and or other experts in biotechnology. The show both highlights the exciting world of biotechnology and the impact it is having on patients while also offering advice and insights for people who have rare or serious diseases as well as their family members or caregivers.

Categories: Health & Fitness

Tags: Alpha1, Biotech, biotechnology, biotherapies, csl, cslbehring, disease, Healthcare, hemophilia, Medicine, pi, primaryimmunedeficiency, raredisease, vonwillebranddisease

HCandU is a podcast dedicated to the metabolic disorder, homocystinuria. This podcast is meant to be a resource for anyone who has HCU or has been affected by HCU. Topics to be discussed on the show include patient stories, research updates, recipes, and interviews with experts in the field of homocystinuria. Whether you or someone you know were just diagnosed or have been a patient for years, we hope you find this podcast helpful!

Categories: Arts, Health & Fitness

Tags: hcu, hcunetworkamerica, hcunetworkaustralia, Homocystinuria, metabolicdisorder, raredisease

Parents share their unique experiences of raising kids with special needs, disabilities, developmental delays, diseases and other challenges.

Categories: Kids & Family

Tags: autism, Children, chromosomedisorder, death, developmentaldelays, diagnosis, disabilities, downsyndrome, earlyintervention, Kids, parenting, raredisease, specialeducation, SpecialNeeds

The On-Air Advocate podcast provides education, advocacy and support for special needs parents, caregivers, those with disabilities and complex medical conditions.

Categories: Health & Fitness, Kids & Family

Tags: advocacy, Caregivers, chronicillness, complexmedicalneeds, differentabilities, disability, medicalconditions, patientadvocacy, raredisease, SpecialNeeds, specialneedsadvocacy, SpecialNeedsParenting