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Erdheim-Chester Disease October 2010 ECD Global Alliance.

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Presentation on theme: "Erdheim-Chester Disease October 2010 ECD Global Alliance."— Presentation transcript:

1 Erdheim-Chester Disease October 2010 ECD Global Alliance

2 What is Erdheim-Chester Disease? Non-Langerhans Cell Histiocytosis Too Many Histiocytes (cells which normally fight infections) Infiltrate Organs Causes Scar-Like Tissue to Surround the Organs & Arteries Bone, Brain, Kidney, Eyes, Lungs, Abdominal Tissue/Organs, Cardiovascular, Skin and More Rarely Others Symptoms Vary Between Patients Depending on Which Organs are Involved Without Successful Treatment: Organ Failure

3 Why Have I Never Heard of ECD? First Described in 1930 by an Austrian (Dr. Erdheim) and an American (Dr. Chester) Pathologist Only About 350 Published Cases in the World Never Heard of by Most Doctors Diagnosis is Difficult and Time Consuming, Made Only by Chance in Some Cases Not Known if Cancer, Auto-Immune, Genetic, etc.

4 What is the Status of ECD? Only a Handful of Doctors Have Treated Multiple Cases Anecdotal Treatments Available Immunotherapy, chemotherapy, radiation, surgery, hormone therapy, corticosteroids, anti-inflammatory drugs, antimetobolite, new cancer drug which specifically inhibits a particular enzyme Results are Variable Literature Says Most Succumb in 2 to 3 Years, However We See Some Patients Live for Decades International Disease Advocacy Group Formed – ECD Global Alliance –

5 First a Diagnosis is Needed When you hear hoofbeats, think horses, not zebras Specialists Often Only Know What it is Not Doctors have Not Seen or Studied Many of the Rare Diseases Often Patients Find the Validity of Their Symptoms Being Questioned Diagnosis Often Takes Years with Patients Shuffled from One Specialist to Another

6 What Are the Patient Issues? Sickness Itself Getting a Diagnosis Finding Knowledgeable Doctors No Agreement on Best Treatments Health Care Costs / Insurance Coverage Expert Doctors Most Likely Out of Network Treatments not Scientifically Verified Transportation / Housing Costs Disability Difficult to Obtain Lack of Support Structure Lack of Information Relative to Progression

7 Status of the ECD Global Alliance Carol, Kathy, RuthAnn Met by Phone First Online Chat Session Held Published website Teleconference with ECD Patients and Dr. Kurzrock First Newsletter Published 501(c)(3) Non-Profit Paperwork Submitted & Board of Directors Formed Jan. 08 Apr. 08 Sep. 08 Oct. 08 Jan. 09 Apr. 09 Aug. 09 Dr. Vaglios Treatment Protocol Communicated Dr. Haroches HLA Study Communicated Organizational ActivitySupport ActivityBringing Information to Patients Medical Advisory Board Formed Dec. 09 501(c)(3) Tax Exempt Status Granted, Effective as of Aug. 28, 2009 Mar. 10 Promoting Research Apr. 10 RFP for Research Project Communicated

8 ECD Global Alliance What is Needed? Raise Additional Research Funds Continue Dialogue with Research Physicians Create and Maintain Patient Registry Future ECD Symposium Support for Patients with Regard to Disability and Other Related Issues

9 What Can We All Do? Be Supportive Be an Advocate Be an Organ Donor Be Generous

10 Questions? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ?

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