The Yearly ED-Lines 2025

Our Yearly ED-Lines newsletter is here — celebrating an incredible year of progress, awareness, and community!

Highlights include ICED25, which showed the true power of our community — families, and professionals uniting with compassion and determination to drive change for everyone affected by Ectodermal Dysplasia; the launch of a groundbreaking women’s research programme recognising that women affected by ED are far more than “just carriers”; and the creation of an NHS Rare Disease Collaborative Network for ED — a huge step forward for patient care.

Between October 2024 and September 2025, our amazing supporters raised an incredible £29,504.37 through fundraisers — thank you!

Don’t miss our annual Christmas Party – on Saturday 6th December 2025 at Hatherley Manor Hotel & Spa, Cheltenham — A magical day of laughter, friendship, and festive fun for all our families.

You can read the latest Yearly ED-Lines HERE