We recently had an interview with Lidya from The Power of Rare. She is an advocate for individuals living with rare genetic diseases. She supports, interviews, and engages with people from all walks of life who are affected socially, emotionally, and physically by rare syndromic conditions. Please check out her YouTube channel as well as our interview with her.

Lidya has also done some fantastic talks through TedX which are deeply moving and well done. Her talks explore the emotional, medical, and ethical challenges surrounding rare diseases and the impact on families.