Sharing a year of hope with the ECD community!

View the 2022 Year-End Newsletter.

Over the past two years, the ECD Global Alliance adjusted to the new norms of distancing and travel bans with more online connections and smaller, regional meetings. We have launched a Patient Navigator Program to help guide patients one-on-one through the process of finding the right doctors, treatment access and coverage, and peer support.  Our continued support of the research community has led to the second FDA-approved drug for ECD, cobimetinib. Not to mention nearly one million in research has been funded from our grant program toward ECD projects thus far, with an additional $450,000 in the pipeline.  International ECD Care Centers continue to be identified and added to the network to bring expert care to patients and consultations to physicians less knowledgeable about the disease. 

After the Annual Patient & Family Gathering and Medical Symposium was put on hold during the pandemic, we are finally able to offer this live meeting on April 27-28, 2023!  Find out more about this event here.

As we reflect on the trials and triumphs of our community members, we want to thank the supporters that come through for those living with ECD every single day.  Your support is not just about your loved one, but about the future of all families faced with Erdheim-Chester Disease.  Your provisions have come in all forms, and we appreciate everything you do!

The ECD Global Alliance is reaching new levels of support for those living with Erdheim-Chester Disease with a matching gift campaign through December 31, 2022!  Thanks to a challenged $11,000 matching gift from generous ECDGA Board members and benefactors –your impact on our critical work will go TWICE as far.

With your donation, we can make the future brighter for all who have been affected by ECD. Please make a gift today to strengthen our work in the year ahead…and know you will do twice the good!  Double Your Gift Today! 

What your gift provides:

• Research – Funding research on Erdheim-Chester Disease is at the forefront of our mission. The 2022 ECD Research Grant Awards will be announced soon!
• Education & Awareness – Physician education is accomplished with international conferences, online webinars, medical specialty outreach, and more.
• Support – Being able to provide patients and their families with the tools and connections they need to advocate for themselves is invaluable. Your donations don’t just help our rare community thrive. 

With gratitude,

The ECD Global Alliance Team