Erdheim-Chester Disease Global Alliance

05/02/2026

𝗘𝗖𝗗𝗚𝗔 𝗛𝗼𝘀𝘁𝘀 𝟭𝟭𝘁𝗵 𝗔𝗻𝗻𝘂𝗮𝗹 𝗠𝗲𝗱𝗶𝗰𝗮𝗹 𝗦𝘆𝗺𝗽𝗼𝘀𝗶𝘂𝗺 𝗶𝗻 𝗕𝗶𝗿𝗺𝗶𝗻𝗴𝗵𝗮𝗺, 𝗔𝗟

On May 1, 2026, the ECDGA Medical Symposium brought together leading experts, researchers, and clinicians dedicated to advancing the understanding and treatment of Erdheim-Chester Disease.

Throughout the day, medical professionals shared the latest research, clinical insights, and emerging therapies fostering collaboration and driving progress toward better outcomes for patients.

This symposium highlighted the power of partnership between the medical and patient communities, reinforcing our shared commitment to innovation, education, and hope for the future.

Thank you to all who participated and continue to push the field forward.

05/01/2026

𝗘𝗖𝗗𝗚𝗔 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 & 𝗙𝗮𝗺𝗶𝗹𝘆 𝗚𝗮𝘁𝗵𝗲𝗿𝗶𝗻𝗴 𝗛𝗲𝗹𝗱 𝗼𝗻 𝗔𝗽𝗿𝗶𝗹 𝟯𝟬, 𝟮𝟬𝟮𝟲 𝗶𝗻 𝗕𝗶𝗿𝗺𝗶𝗻𝗴𝗵𝗮𝗺, 𝗔𝗟

On April 30, 2026, the ECDGA Patient and Family Gathering brought together an incredible community of strength, support, and shared understanding. 💙

Patients, families, and caregivers connected in a meaningful way—sharing stories, learning from one another, and reminding us all that no one faces Erdheim-Chester Disease alone.

We were especially grateful to have medical professionals join the gathering, engaging directly with patients and families while sharing their research, expertise, and insights. These conversations helped bridge the gap between science and lived experience in a truly impactful way.

From heartfelt conversations to moments of hope and encouragement, this gathering was a powerful reminder of the resilience within our community and the importance of coming together.

Thank you to everyone who joined us and continues to support the ECDGA mission. Together, we are stronger. 💫

04/30/2026

𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗮𝗻𝗱 𝗙𝗮𝗺𝗶𝗹𝘆 𝗚𝗮𝘁𝗵𝗲𝗿𝗶𝗻𝗴 𝗠𝗲𝗲𝘁 𝗮𝗻𝗱 𝗚𝗿𝗲𝗲𝘁

The ECDGA Patient and Family Gathering kicked off on Wednesday, April 29th with the Meet and Greet.

It was truly special to connect face-to-face, share stories, and strengthen the sense of community that means so much to all of us. From heartfelt conversations to moments of laughter, every interaction was a reminder of the resilience and support that defines this group.

Thank you to everyone who joined us and made the day so meaningful. We’re grateful for each of you and look forward to the Patient & Family Gathering.

04/15/2026

You’re not alone—and this is your chance to feel it. Join a global community of ECD patients and families to connect, learn, and support each other before registration closes.

Time is almost up to secure your spot for one of the most meaningful events in the Erdheim-Chester Disease (ECD) community. The 2026 Patient & Family Ga ...

03/31/2026

Real progress in rare disease starts with conversations. At AAD, experts and future clinicians came together to share knowledge, ask questions, and push ECD awareness forward—one interaction at a time.

The Erdheim-Chester Disease Global Alliance (ECDGA) was honored to host Dr. Julio Santori-Valinotti of the Mayo Clinic during a special “Expert Hour” at the ...

03/30/2026

Thank You to our Medical Professionals. Today, on Doctor’s Day, we honor the incredible physicians who care for the Erdheim-Chester Disease community. 💙

Your dedication to understanding, treating, and supporting patients with this rare disease brings hope, comfort, and better outcomes every day.

Thank you for your compassion, expertise, and unwavering commitment.

03/29/2026

ECDGA Board President, Diane Schriner and Executive Director, Jerome Henson hosts a dinner while in Denver for Doctors, Patients, and Family Members. Those attending were Julio Santori, Evangeline Simones, Nicole Westphal, Timothy Westphal (TJ), Dr Denise Damek, Colby Cevering, and Doug Meacham.

03/28/2026

Board President, Diane Schriner and Executive Director, Jerome Henson attended the American Academy of Dermatology Conference to spread awareness about ECD. While there they met up with Dr. Julio Santori-Valinotti from the Mayo Clinic.

03/28/2026

You’re not alone—and you don’t have to navigate ECD that way. Join patients, families, and experts in Birmingham this April to connect, learn, and support each other. Spots are limited.

Registration is open for the Patient and Family Gathering taking place April 29–30, 2026, in Birmingham, Alabama. This event brings together patients, famil ...

03/27/2026

Better sleep isn’t optional with ECD—it’s treatment. Small habits like fixing your sleep schedule or reducing screen time can ease fatigue, pain, and brain fog. Start with one change tonight.

Sleep is more than rest—it’s a key part of managing Erdheim-Chester Disease. This Sleep Awareness Month, we’re sharing simple, practical tips to help ECD pa ...

03/26/2026

The official 2026 Erdheim-Chester Disease Global Alliance (ECDGA) Patient & Family Gathering T-shirt is now available. Celebrate community, connection, and strength with this Birmingham-inspired design while supporting awareness for Erdheim-Chester Disease.

Wear your support, raise awareness, and be part of the ECD community.

The official 2026 Erdheim-Chester Disease Global Alliance (ECDGA) Patient & Family Gathering T-shirt is now available. Celebrate community, connection, ...

03/12/2026

Registration is now open for the 2026 Patient & Family Gathering in Birmingham, Alabama, April 29–30. Join patients, families, and caregivers to connect, learn from experts, and explore the latest research. Reserve your hotel by April 6.

Registration is open for the Patient and Family Gathering taking place April 29–30, 2026, in Birmingham, Alabama. This event brings together patients, famil ...