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Erdheim -Chester Disease

Erdheim -Chester Disease. ECD Global Alliance. October 2010. 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

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Erdheim -Chester Disease

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  1. Erdheim-Chester Disease ECD Global Alliance October 2010

  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 – www.erdheim-chester.org

  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 RFP for Research Project Communicated Medical Advisory Board Formed Teleconference with ECD Patients and Dr. Kurzrock Dr. Vaglio’s Treatment Protocol Communicated Carol, Kathy, RuthAnn Met by Phone Dr. Haroche’s HLA Study Communicated Mar. ‘10 Jan. ‘09 Aug. ‘09 Apr. ‘08 Oct. ‘08 Jan. ‘08 Sep. ‘08 Oct. ‘08 Apr. ‘09 Dec. ‘09 Apr. ‘10 501(c)(3) Tax Exempt Status Granted, Effective as of Aug. 28, 2009 First Online Chat Session Held 501(c)(3) Non-Profit Paperwork Submitted & Board of Directors Formed Published www.erdheim-chester.org website First Newsletter Published Organizational Activity Support Activity Bringing Information to Patients Promoting Research

  8. ECD Global AllianceWhat is Needed? • Raise Additional Research Funds • Continue Dialogue with Research Physicians • Create and Maintain Patient Registry • Future ECD Symposium • Support for Patients with Regardto Disability and Other RelatedIssues

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

  10. ? ? Questions? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ?

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