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Press Releases

The Erdheim-Chester Disease Global Alliance Welcomes Lebanese ECD Care Center

The American University of Beirut Medical Center joins the rapidly growing Erdheim-Chester Disease care system.

Erdheim-Chester Disease Declared a Histiocytic Neoplasm

The World Health Organization reclassifies the rare disease

Global nonprofit with local roots fight rare disease

The Erdheim-Chester Disease Global Alliance supports those affected by Erdheim-Chester Disease out of DeRidder, Louisiana

DeRidder Non-Profit in Paris During ECD Awareness Week

The Erdheim-Chester Disease Global Alliance supports the rare disease by hosting events abroad.

Mason City will serve as hub for worldwide rare disease fundraiser

Bob Rodgers and his wife, Phyllis, are hosting the ECD Angel of Hope Park-to-Park 5K Fun Run on Sept. 19 to raise ...

Rare disease marks first awareness week Sept. 14-18

This is Erdheim-Chester Disease Awareness Week, and Leslie and her husband, Rich, are not only calling attention ...

Fundraiser for Gurnal Jones

A fundraiser was held in honor of former Irondequoit and St. John Fisher College basketball standout, Gurnal ...

The Exceptional: What Miraculous Recoveries Can Teach Us About Beating Cancer

An ECD patient is interviewed and quoted in Popular Mechanics on how vemurafenib has changed her life.

“A Leap Forward in Rare Disease Treatment” Erdheim-Chester disease community collaborates to change the course of a disease

A film was created to increase awareness of ECD and provide hope to those fighting this disease.  A special thanks ...

Louisiana Governor proclaims annual Erdheim-Chester Disease awareness week

Louisiana is the ECDGA’s office location and the state has issued a Proclamation for its first-ever ECD Awareness Week.

SOBI, Inc. Awards Erdheim-Chester Disease Non-Profit Grant for Care Center Creation

First of its kind – ECD Referral Care Centers were made possible in part by pharmaceutical funding.

International Erdheim-Chester Disease Conference

TMC Houston News announces the 3rd Annual Symposium in their events section.
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