Erdheim-Chester Disease Global Alliance

02/23/2026

Only a Few Days Until Rare Disease Day

02/20/2026

Ziggy believes change starts with us

02/19/2026

Sharing Strength: Rebecca’s Story with ECD-Ziggy recently had the pleasure of interviewing Rebecca Boone about her journey with ECD. Rebecca shared her personal experiences, challenges, and the impact ECD has had on her life. Her story is a powerful reminder of why awareness, advocacy, and community matter so much.

Stay tuned to hear Rebecca’s inspiring perspective and help us continue spreading hope and understanding about Erdheim-Chester Disease.

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

02/18/2026

Families affected by rare disease are experts in resilience. Ziggy and ECDGA are learning from them every day.

02/16/2026

Rare Disease isn't a Statistic

02/14/2026

Happy Valentine's Day

02/13/2026

As we prepare for  Rare Disease Day, it’s a good time to ask a simple question: What does “rare” really mean? In the U.S., a disease is consi ...

02/12/2026

Rare doesn't mean invisible. Behind every rare diagnosis is a family navigating strength, fear, love, and hope. ECDGA is here to walk beside them.

02/11/2026

Awareness Leads to Research and Research Leads to Hope - Ziggy Fact: Many rare diseases still have no cure—but awareness leads to research, and research leads to hope.

02/09/2026

Being Rare Can Feel Lonely

02/07/2026

02/05/2026

Rare Disease Day