A rare community will join together to connect & learn.

Finally, the Erdheim-Chester Disease (ECD) community of patients, loved ones, and physicians will gather together again!  During the challenges of the pandemic, serving our members remained the top priority.  Through regularly scheduled chat sessions, education webinars, and a commitment to support, ECDGA has been able to keep our members connected during the test of the pandemic.

The Annual International Erdheim-Chester Disease Events will be held in Rochester, MN from April 6 – 8, 2022. During this three-day conference, there will be meetings tailored for each member of the community.

The ECDGA is honored to have this year’s co-hosts aiding in the planning and execution. Dr. Ronald Go is a hematology-oncologist at the Mayo Clinic in Rochester near the meeting location. Dr. Go is the leading physician for the ECD Care Center at his clinic. He has a passion for creating a better experience for all patients.  Dr. Go has also shown great care to the community by empowering upcoming physicians with inspiring and effective mentoring in the field of histiocytosis. Also hosting is Dr. Gaurav Goyal, an Assistant Professor at the University of Alabama at Birmingham. Dr. Goyal has been a dedicated member of the ECD community both professionally and in a volunteer role for the ECDGA. His contributions have positively impacted research and the standard of care for histiocytosis patients, in addition to giving exceptional patient care. Following his mentorship with Dr. Go, Dr. Goyal is now leading an ECD Care Center in Birmingham. Both Drs. Go and Goyal have been instrumental in the growth and success of the ECDGA.

The 9^th ECD Medical Symposium is scheduled for April 6, offering medical professionals an opportunity to connect and collaborate on the latest ECD research findings, as well as share their knowledge related to the treatment and care of ECD patients. All medical professionals interested in ECD and adult histiocytosis, especially those clinicians new to treating ECD patients are strongly encouraged to attend.

The 8^th ECD Patient and Family Gathering on April 8 is an event offered to all ECD patients, caregivers, and anyone interested in learning more about care and support for ECD patients. The patient meeting sets out to unite patients and family members, as well as increase their knowledge and understanding of ECD. During the meeting, physicians knowledgeable in ECD care offer their specialized expertise and provide answers to the families’ questions. Many patients have reported successful adjustments in their care following these meetings.  All ECD patients and their loved ones, especially those with a new diagnosis or who have never attended an ECD event, are strongly encouraged to consider this opportunity.

There is also time available for the professionals and patients to mingle during a social reception held on April 7.  This is a more informal setting for introductions, meeting new members, and enjoying fellowship with those that understand the struggles of living with ECD.

 *COVID statement: We are monitoring the sanitation ordinances for this location in hopes that the virus will be behind us in time to hold the meeting as planned.  We will continue to monitor the situation and post updates if anything changes.  Meanwhile, we will continue planning for the dates of April 6 through April 8, 2022. 

Learn more:

• Medical Professionals: Learn more and register.
• Patients and Loved Ones: Find the event details and registration here.
• What is ECD?
• More about the ECD Global Alliance