Press Releases
Care Network Serves Australian Rare Disease Patients
The Erdheim-Chester Disease Global Alliance is proud to announce the first ECD Referral Care Center to be located ...
FDA Approves Zelboraf (Vemurafenib) for Erdheim-Chester Disease with BRAF V600 Mutation
First FDA-Approved drug for this rare disease
Stafford teen to be pilot for a day
A teenager suffering from Erdheim-Chester Disease gets to spend a day with military pilots and aircraft and pilot ...
Newmarket man with rare disease must battle system for coverage
Canadian patient tells about his journey with ECD and of hopes for a better healthcare system.
If I Die Tomorrow, God is Still in Control
“Despite the change that sickness has brought into Janet’s life, she welcomes each new day with open arms, and ...
Strength in Faith: Local pastor fights through illness with scripture
Hope, faith, and community come together for this Erdheim-Chester Disease patient to strengthen his fight against ...
DeRidder Thursday Study Club Supports Efforts to Fight Erdheim-Chester Disease
ECD Global Alliance president and founder, Kathy Brewer, spoke to a local club about the progress of the local ...
Global Excellence Awards Given for Rare Disease Advocacy
Exceptional contributors recognized at the Third Annual International Erdheim-Chester Disease Patient & Family ...
Italian Scientists Win Grant from Grassroots Louisiana Non-Profit
The ECD Global Alliance awards Erdheim-Chester Disease research grant for new treatment possibilities using the ...
Governor Bel Edwards Proclaims Rare Disease Day in Louisiana
Erdheim-Chester Disease is one of 7,000 rare diseases supported by the Louisiana proclamation.
Mayor Roberts proclaims Rare Disease Day in DeRidder
Erdheim-Chester Disease is one of 7,000 rare diseases supported by the local proclamation.
Culver’s of Highland Supports Rare Disease Day
Local rare-disease patient organizes fundraiser to raise awareness of Erdheim-Chester Disease in Indiana.
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