Rare Disease Week 2026: In Conversation with...Charlotte Doody, Mum to Maisie скачать в хорошем качестве

Rare Disease Week 2026: In Conversation with...Charlotte Doody, Mum to Maisie

In Conversation with...Charlotte Doody, Mum to Maisie | Rare Disease Week 2026 In this video, we speak with Charlotte Doody, mum to Maisie, who shares her family’s personal experience of living with CFC Syndrome, a rare genetic condition affecting only 1,000 people worldwide. Charlotte reflects on their journey, the challenges they have faced, and the importance of awareness, support, and research for families affected by rare conditions. Part of our Rare Disease Week series, this conversation highlights the real-life experiences behind rare disease diagnoses and the value of listening to patient and family voices within healthcare and research. Who should watch: Healthcare professionals, researchers, patient advocates, families affected by rare diseases, and anyone interested in learning more about the lived experience of rare conditions. #RareDiseaseWeek #RareDisease #PatientVoices #Genomics #Healthcare #RareDiseaseAwareness #Genetictesting