• +1-337-202-5200
  • support@erdheim-chester.org
  • English
    • Français (French)
    • Deutsch (German)
    • Español (Spanish)
    • 繁體中文 (Chinese (Traditional))
    • Nederlands (Dutch)
    • Ελληνικά (Greek)
    • עברית (Hebrew)
    • हिन्दी (Hindi)
    • Italiano (Italian)
    • Norsk bokmål (Norwegian Bokmål)
    • Português (Portuguese (Brazil))
  • English
    • French
    • German
    • Spanish
    • Chinese (Traditional)
    • Dutch
    • Greek
    • Hebrew
    • Hindi
    • Italian
    • Norwegian Bokmål
    • Portuguese (Brazil)
  • ECD Global Alliance Logo
  • What is ECD
        • Overview
        • Treatments
        • Symptoms
        • Care Centers
        • Diagnosis
        • Care Monitoring
  • 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

Wife fighting to save others from rare disease after husband’s death

by Asmaa Javed | Dec 31, 2013 | Voices of ECD

TV interview of Kathy and Charles, two members of the ECD Global Alliance. The interview explains what motivates Kathy, President of the ECD Global Alliance, to continue searching for better treatment options for ECD and supporting the ECD community.

Teaching NeuroImages: Ataxia and diabetes insipidus

by Asmaa Javed | Dec 28, 2013 | Published Papers

Romain Lefaucheur, David Maltête, Julien Haroche, et al. Neurology. 2013 Jul 16;81(3):e19.

Erdheim-Chester Disease: a comprehensive review of the literature

by Asmaa Javed | Dec 28, 2013 | Published Papers

Roei D Mazor, Mirra Manevich-Mazor, Yehuda Shoenfeld Orphanet Journal of Rare Diseases. 2013 Sept 8, 8:137

Erdheim-Chester disease–clinical pathological case discussion

by Asmaa Javed | Dec 28, 2013 | Published Papers

Rivera TL, Irish RD, Hoda SA, Steiner GC, Rackoff PJ, Fischer HD Bull Hosp Jt Dis (2013). 2013;71(2):152-5

Erdheim-Chester disease: an uncommon cause of upper urinary tract obstruction

by Asmaa Javed | Dec 28, 2013 | Published Papers

Tsu JH, Yuen SK, Cheung H, Lee YW, Liu PL. Hong Kong Med J. 2013 Oct;19(5):451-4
« Older Entries

Search Our Blogs

Recent Posts

  • ECDGA at the 2025 American College of Rheumatology (ACR) Annual Conference
  • Managing Stress: What Are Your Techniques?
  • Dr. Gaurav Goyal and ECDGA Board President Diane Schriner Collaborate on Plans for 2026 Patient & Family Gathering and Medical Symposium
  • New Hope in Targeted Therapy for Histiocytosis
  • Xavier Solanich, MD, PhD
Donate

+1-337-202-5200
support@erdheim-chester.org

What is ECD?
  • Overview
  • Symptoms
  • Diagnosis
  • Treatments

Patients/Loved Ones

  • Chat Virtually
  • In-person Meetings
  • Patient Resources
  • Webinars
About Us
  • Our Story
  • Board and Staff
  • Resources
  • Medical Advisory Board
How to Help
  • Host Fundraisers
  • Volunteer
  • Spread the Word
Medical Professionals
  • Medical Resources
  • Treatment Trials
  • Grant Opportunities
  • Medical Symposium
  • Follow
  • Follow
  • Follow
  • Follow
  • Follow
  • Follow


This website is for informational purposes only.

Designed by The Egghead. Copyright 2025. All rights Reserved ECD GLOBAL ALLIANCE. A 501(c)(3) organization. EIN# 27-0759192.

ECD Global Alliance Logo
Charity Navigator Four-Star Rating

!

Back to Top

ECD Global Alliance does not provide Medical Advice, Diagnosis or Treatment.

Terms of Use  and  Privacy Policy

h

Join Us



Donate



Care Centers



Events