Press Releases
New Care Centers for Erdheim-Chester Disease Patients Support Patient Access
The Seattle Cancer Center Alliance and Toronto’s Mount Sinai Hospital join the ECD Care Center network.
Western Louisiana Nonprofit Grows International Care Center Network
Washington University in St. Louis and The Cancer Institute of São Paulo – the University of São Paulo in Brazil ...
St. Louis on the Map for Rare Disease Care
Washington University in St. Louis joins the Erdheim-Chester Disease Care Center Network.
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.
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.
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