rare connect
A new year, new programs, and renewed HOPE are on the horizon for the ECD community!
The ECD Global Alliance is reaching new levels of support for those fighting Erdheim-Chester Disease with a matching gift campaign running from December 1 to December 31, 2020!
Thanks to an $80,000 matching gift from a group of generous ECDGA Board members and benefactors –your impact on our critical work will go TWICE as far.
Leaving 2020 Behind Us
Just like so many individuals, businesses, and organizations, the ECDGA has managed to overcome many hurdles through the year 2020. We transitioned our annual patient and medical events to a virtual platform to connect with families and physicians despite the distance. We continue to press forward with new methods, continuing on the path pledged to our community. Our collaboration with the rare disease community continues to strengthen and grow as we join hands, using this time to create partnerships to help patients and families now and in years to come.
Read our final newsletter to read about the progress made this year.
2020 Newsletter Print-Friendly
The Future is Bright
The ECDGA Board of Directors has worked hard this year as they strategically plan for the future of the community.
- More Research! Funding research on Erdheim-Chester Disease is at the forefront of our mission, and we will continue the quest for better treatments.
- Patient Navigation Support! The ECDGA will add a staff position for a Patient Navigator who will serve as a point of contact for patients and caregivers to turn to for help and information about medical processes.
- Increased caregiver support! Support for this group involves programs that help those caring for loved ones feel less alone and have access to tools to help cope with difficult situations.
- Greater physician awareness! Implementing innovative methods of awareness and education to medical professionals will help improve diagnosis rates and allow for better treatment options, ultimately translating into better patient outcomes.
We’re forever grateful for the support you provide!
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!
Please take a few minutes to hear from our community in this video on why they give to the ECD Global Alliance.
Other ways to donate to the ECD Global Alliance without fees:
- Mail check to ECD Global Alliance, P.O. Box 775, DeRidder, LA 70634 USA
- PayPal Giving: paypal.com/us/fundraiser/charity/1903749 [must have PayPal account]
