This episode explores the realities of living with rare diseases, the importance of awareness, and the power of community and advocacy. Jill and Janine share their personal journeys with their children’s rare diagnoses, emphasizing the need for understanding, support, and systemic change.
keywords: rare disease, zebras, medical advocacy, diagnosis, community support, rare conditions, healthcare, patient stories
key topics:
Living with rare diseases
Importance of diagnosis and advocacy
Building community and support networks
Chapters:
00:00 Raising Awareness for Rare Diseases
05:13 The Challenge of Undiagnosed Conditions
10:13 Transitioning to Adulthood
15:13 The Importance of Understanding Rare Diseases
resources:
Rare Disease Day Official Site - https://www.rarediseaseday.org/
Camp Bogg Creek - https://www.boggycreek.org/
PubMed - https://pubmed.ncbi.nlm.nih.gov/