Erdheim-Chester Disease Global Alliance

02/28/2026

Today is Rare Disease Day. I’m Ziggy and along with ECDGA I’m proud to stand with every individual and family affected by rare disease. Together, we are rare—but never alone.

02/27/2026

Tomorrow is Rare Disease Day

02/26/2026

Every ECD journey is unique. There is no one-size-fits-all diet, and nutrition should always complement, not replace, medical treatment. Listening to y ...

02/26/2026

Every ECD journey is unique. There is no one-size-fits-all diet, and nutrition should always complement, not replace, medical treatment. Listening to your body and working closely with your healthcare team is key. If you do not have a nutritionist on your medical team, you may want to check with your doctor about adding one to the team.

At ECDGA, we believe that informed choices empower patients. Nutrition is one more way to support your strength, resilience, and quality of life.

To hear from nutritionists about healthy eating with a rare disease like ECD, please see the videos listed in the

ECD Nutrition Playlist

on YouTube. When viewing the list, please scroll down for English Versions.

This playlist highlights the role of nutrition, wellness, and integrative medicine in the lives of people affected by Erdheim-Chester Disease (ECD). While EC...

02/25/2026

Rare Disease Day is almost here
ECDGA is proud to stand with individuals and families living with rare diseases today and every day.

By sharing this post, you help raise awareness, spark conversations, and remind others that rare does not mean alone. Awareness leads to understanding, support, and hope.

Join us on February 28, 2026, and help spread the word.

Together, we can make a difference.

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 ...