Rare Disease Day and the Strength in the Unseen

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 diseasesImportance of diagnosis and advocacyBuilding community and support networksChapters:00:00 Raising Awareness for Rare Diseases05:13 The Challenge of Undiagnosed Conditions10:13 Transitioning to Adulthood15:13 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/