News & Media

Lara began at a powerful conference exploring the True Faces of Rare, highlighting the real, lived experiences behind the statistics. From there, she made her way to BBC Broadcasting House to record an interview for the #IamNumber17 campaign. It was an incredible opportunity to share her journey with Ehlers-Danlos syndrome - shining a light on the realities of living with a rare condition, the challenges of getting a diagnosis, and the importance of being seen and heard. We'

What does it take to live with Ehlers-Danlos Syndrome and still lead a global movement for change? 🌍   In this episode, Lara Bloom shares her inspiring journey from navigating her own diagnosis to becoming one of the most influential advocates for rare, chronic, and invisible conditions worldwide. Lara opens up about balancing health, motherhood, and international advocacy while pushing for research, awareness, and medical collaboration. She also shares practical advice on m

Watch this instagram live recording of Lara speaking to Carey about disability representation, authentic stories, and Carey's new film, 'Where did the adults go?' (directed by Courtney Marsh) Watch here