Erdheim-Chester Disease Global Alliance

Erdheim-Chester Disease Global Alliance Erdheim-Chester Disease Global Alliance | Dedicated to awareness, support, education, and research for the rare disease ECD worldwide.

Progress happens because people work together.Patients, caregivers, physicians, researchers, volunteers, advocacy organi...
09/20/2026

Progress happens because people work together.

Patients, caregivers, physicians, researchers, volunteers, advocacy organizations, supporters, and ECDGA all play an important role in moving ECD research forward.

See this collaboration in action and explore presentations, research updates, and highlights from the 2026 ECD Patient & Family Gathering.

Together, we are building a stronger future for everyone affected by ECD.

https://www.erdheim-chester.org/event/11th-annual-ecd-patient-family-gathering-birmingham-2026/?utm_source=fb_page&utm_medium=Erdheim-Chester+Disease+Global+Alliance&utm_campaign=publer

Progress happens because people work together. Patients, caregivers, physicians, researchers, volunteers, advocacy organizations, supporters, and ECDGA all ...

Rare diseases need people willing to speak up.Every conversation about ECD can increase awareness and help patients, fam...
09/20/2026

Rare diseases need people willing to speak up.

Every conversation about ECD can increase awareness and help patients, families, healthcare professionals, and communities better understand this ultra-rare disease.

You donโ€™t have to be an expert to be an advocate.

๐—ฌ๐—ผ๐˜‚๐—ฟ ๐˜ƒ๐—ผ๐—ถ๐—ฐ๐—ฒ ๐—ฐ๐—ฎ๐—ป ๐—บ๐—ฎ๐—ธ๐—ฒ ๐—ฎ ๐—ฑ๐—ถ๐—ณ๐—ณ๐—ฒ๐—ฟ๐—ฒ๐—ป๐—ฐ๐—ฒ.

๐—ง๐—ฎ๐—ธ๐—ฒ ๐—”๐—ฐ๐˜๐—ถ๐—ผ๐—ป: Share one thing youโ€™ve learned about ECD this month with someone who didnโ€™t know about the disease before.

Help one more person .

Rare diseases need people willing to speak up. Every conversation about ECD can increase awareness and help patients, families, healthcare professionals, an ...

The future of ECD research is full of possibility.Researchers around the world continue exploring new treatments, better...
09/19/2026

The future of ECD research is full of possibility.

Researchers around the world continue exploring new treatments, better ways to diagnose ECD, and deeper insights into how the disease develops.

There is still work to do, but every new discovery brings new hope.

๐—ง๐—ต๐—ฒ ๐—ณ๐˜‚๐˜๐˜‚๐—ฟ๐—ฒ ๐—ถ๐˜€ ๐—ฏ๐—ฟ๐—ถ๐—ด๐—ต๐˜๐—ฒ๐—ฟ ๐—ฏ๐—ฒ๐—ฐ๐—ฎ๐˜‚๐˜€๐—ฒ ๐—ฟ๐—ฒ๐˜€๐—ฒ๐—ฎ๐—ฟ๐—ฐ๐—ต ๐—ฐ๐—ผ๐—ป๐˜๐—ถ๐—ป๐˜‚๐—ฒ๐˜€.

The future of ECD research is full of possibility. Researchers around the world continue exploring new treatments, better ways to diagnose ECD, and deeper i ...

Not long ago, very little was known about ECD.Today, researchers understand far more about the disease than ever before....
09/18/2026

Not long ago, very little was known about ECD.

Today, researchers understand far more about the disease than ever before. Advances in diagnosis, greater collaboration among specialists, and continued scientific discovery are helping shape a brighter future.

Every milestone reminds us that progress is possible.

๐—›๐—ผ๐—ฝ๐—ฒ ๐—ถ๐˜€ ๐—ฏ๐˜‚๐—ถ๐—น๐˜ ๐—ผ๐—ป๐—ฒ ๐—ฑ๐—ถ๐˜€๐—ฐ๐—ผ๐˜ƒ๐—ฒ๐—ฟ๐˜† ๐—ฎ๐˜ ๐—ฎ ๐˜๐—ถ๐—บ๐—ฒ.

Not long ago, very little was known about ECD. Today, researchers understand far more about the disease than ever before. Advances in diagnosis, greater col ...

Research Funding OpportunityThe ECD Global Alliance is accepting Letters of Intent for its 2026 Early Career Investigato...
09/17/2026

Research Funding Opportunity

The ECD Global Alliance is accepting Letters of Intent for its 2026 Early Career Investigator Grant. Up to $60,000 USD will be awarded for a two-year research project focused on Erdheim-Chester Disease or related adult histiocytic disorders.

International submissions are welcome. Letters of Intent are due November 28, 2026.

View the guidelines and apply: See information HERE: https://www.erdheim-chester.org/research-funding/

Post exactly as above to social media.

Behind every discovery are dedicated physicians and researchers working to improve the lives of people with ECD.Their co...
09/17/2026

Behind every discovery are dedicated physicians and researchers working to improve the lives of people with ECD.

Their commitment to caring for patients, conducting research, and sharing knowledge continues to move the field forward.

Today we celebrate the experts helping turn hope into progress. Maybe today would be a good day to thank your doctor by sending them a note of thanks.

Behind every discovery are dedicated physicians and researchers working to improve the lives of people with ECD. Their commitment to caring for patients, co ...

Every breakthrough starts with a question.Clinical research helps us better understand ECD, improve diagnosis, evaluate ...
09/16/2026

Every breakthrough starts with a question.

Clinical research helps us better understand ECD, improve diagnosis, evaluate treatments, and learn more about how this rare disease affects people.

Each study brings us one step closer to better care for future patients. Click HERE: https://www.erdheim-chester.org/research-funding/ to see research projects funded by ECDGA.

Let us know in the comments if have been involved in any research projects.

๐—ฅ๐—ฒ๐˜€๐—ฒ๐—ฎ๐—ฟ๐—ฐ๐—ต ๐—ฐ๐—ฟ๐—ฒ๐—ฎ๐˜๐—ฒ๐˜€ ๐—ต๐—ผ๐—ฝ๐—ฒ.

Every breakthrough starts with a question. Clinical research helps us better understand ECD, improve diagnosis, evaluate treatments, and learn more about ho ...

Hope begins with expert care.ECD Care Centers bring together physicians with experience diagnosing and treating this ult...
09/15/2026

Hope begins with expert care.

ECD Care Centers bring together physicians with experience diagnosing and treating this ultra-rare disease. They also help advance research, educate healthcare professionals, and improve care for patients around the world. Click Here to see a list of Care Centers.

Every new Care Center helps strengthen the future of the ECD community.

Please comment with what ECD Care Center are you seen at?

๐—›๐—ผ๐—ฝ๐—ฒ ๐—ด๐—ฟ๐—ผ๐˜„๐˜€ ๐˜„๐—ต๐—ฒ๐—ป ๐—ฒ๐˜…๐—ฝ๐—ฒ๐—ฟ๐˜๐—ถ๐˜€๐—ฒ ๐—ถ๐˜€ ๐˜€๐—ต๐—ฎ๐—ฟ๐—ฒ๐—ฑ.

Hope begins with expert care. ECD Care Centers bring together physicians with experience diagnosing and treating this ultra-rare disease. They also help adv ...

You donโ€™t have to be a scientist or a doctor to make an impact.You can help by:โ€ข Sharing information about ECD.โ€ข Support...
09/14/2026

You donโ€™t have to be a scientist or a doctor to make an impact.

You can help by:

โ€ข Sharing information about ECD.
โ€ข Supporting ECD Global Alliance.
โ€ข Listening to patient stories.
โ€ข Encouraging others to learn about rare diseases.
โ€ข Speaking up for those living with ECD.
โ€ข Every action, no matter how small, helps create a future where fewer people face ECD alone.

๐—ง๐—ผ๐—ด๐—ฒ๐˜๐—ต๐—ฒ๐—ฟ ๐˜„๐—ฒ ๐—บ๐—ฎ๐—ธ๐—ฒ ๐—ฟ๐—ฎ๐—ฟ๐—ฒ ๐˜ƒ๐—ถ๐˜€๐—ถ๐—ฏ๐—น๐—ฒ.

You don't have to be a scientist or a doctor to make an impact. You can help by: Sharing information about ECD. Supporting ECD Global Alliance. Listeni ...

ECD may be rare, but no one has to face it alone.Across the world, patients, caregivers, physicians, researchers, volunt...
09/13/2026

ECD may be rare, but no one has to face it alone.

Across the world, patients, caregivers, physicians, researchers, volunteers, and advocates are working together to build a stronger future for everyone affected by ECD.

Distance may separate us, but our community connects us.

See a map of patient locations.

Together we make rare visible.

ECD may be rare, but no one has to face it alone. Across the world, patients, caregivers, physicians, researchers, volunteers, and advocates are working tog ...

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Deridder, LA

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Monday 9am - 5pm
Tuesday 8am - 5pm
Wednesday 9am - 5pm
Thursday 8am - 5pm
Friday 9am - 5pm

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