+1-337-202-5200
support@erdheim-chester.org
Join Us
Donate
English
English
French Spanish German Italian Portuguese Hebrew Hindi Greek Chinese Dutch Norwegian
ECD Global Alliance Logo
English
English
French Spanish German Italian Portuguese Hebrew Hindi Greek Chinese Dutch Norwegian
  • What is ECD
        • Overview
        • Care Centers
        • Diagnosis
        • Care Monitoring
        • Treatments
        • Symptoms
  • Patients/Loved Ones
        • Care Centers
        • Webinars
        • Testimonials
        • What Should I Do
        • Community Chats
        • Treatment Trials
        • Family / Carer General Information
        • Connect
        • Patient & Family Gatherings
        • Patient Surveys / Studies
        • Family / Carer Resources
        • Self-Care with ECD
        • Patient Resources
        • Request More Information
        • Family Members
        • Caregiver Connect
  • Medical Professionals
        • Care Centers
        • Treatment Trials
        • General Information
        • Patient Surveys / Studies
        • Grant Opportunities
        • Payer Appeals
        • Medical Resources
        • Annual Medical Symposiums
  • About Us
        • Our Story
        • Board and Staff
        • Resources
        • Medical Advisory Board
        • Member Locations
        • News
        • Patient Stories
        • Events
        • History
  • How to Help
        • Spread the Word
        • Award Nominations
        • Host Fundraisers
        • Ways to Donate
        • Volunteer
  • Join Us
  • Donate
  • Join Us
  • Donate

N.B. woman calling on government to cover cost of life-saving drug

Dec 31, 2016

“It’s really hard knowing there is a drug out there that if I can’t get then my life is going to be over.” – Canadian patient with Erdheim-Chester Disease

DeRidder Thursday Study Club Supports Efforts to Fight Erdheim-Chester Disease

Dec 31, 2016

ECD Global Alliance president and founder, Kathy Brewer, spoke to a local club about the progress of the local non-profit.
Global Excellence Awards Given for Rare Disease Advocacy

Global Excellence Awards Given for Rare Disease Advocacy

Dec 31, 2016

Exceptional contributors recognized at the Third Annual International Erdheim-Chester Disease Patient & Family Gathering.
Italian Scientists Win Grant from Grassroots Louisiana Non-Profit

Italian Scientists Win Grant from Grassroots Louisiana Non-Profit

Dec 31, 2016

The ECD Global Alliance awards Erdheim-Chester Disease research grant for new treatment possibilities using the RCCS™  Bioreactor.
Governor Bel Edwards Proclaims Rare Disease Day in Louisiana

Governor Bel Edwards Proclaims Rare Disease Day in Louisiana

Dec 31, 2016

Erdheim-Chester Disease is one of 7,000 rare diseases supported by the Louisiana proclamation.
« Older Entries
Next Entries »

Search Our Blogs

Recent Posts

  • Introducing Mary Burgin Executive Director Erdheim-Chester Disease Global Alliance
  • Research Matters
  • Save the Date: 2027 ECDGA Medical Symposium in Glasgow
  • Save the Date: 2027 ECDGA Patient and Family Gathering
  • Research Funding Opportunity
ECD Global Alliance Logo

Dedicated to the awareness, support, education, and research related to Erdheim-Chester Disease since 2008.

Quick Links

What is ECD

Care Centers

Patient Resources

Research

Get Involved

Join Us

Donate

Community Chats

Events

Contact

+1-337-202-5200

Email Us

P.O. Box 775
DeRidder, LA 70634 USA

Platinum Transparency 2025
Charity Navigator
  • Follow
  • Follow
  • Follow
  • Follow
  • Follow
  • Follow

Rare Connect
Designed by Ask the Egghead, Inc. © 2026 ECD Global Alliance. All rights reserved.
  • Follow
  • Follow
  • Follow
  • Follow
  • Follow
  • Follow

Designed by Ask the Egghead, Inc. © 2026 ECD Global Alliance. All rights reserved.

h

Join Us



Donate



Care Centers



Events

h

Join Us



Donate



Care Centers



Events

We've detected you might be speaking a different language. Do you want to change to:
English
English
English
Change language to French French
Change language to Spanish Spanish
Change language to German German
Change language to Italian Italian
Change language to Portuguese Portuguese
Change language to Hebrew Hebrew
Change language to Hindi Hindi
Change language to Greek Greek
Change language to Chinese Chinese
Change language to Dutch Dutch
Change language to Norwegian Norwegian
Change Language
Close and do not switch language