Patient Advocacy Groups Unite in Support of Those with Rare Eosinophil-Associated Diseases
(Atlanta, GA) -- To support patients of eosinophil-associated diseases and to advance key issues of importance to this population, patient advocacy groups from around the world have united together to form the Coalition of Eosinophil Patient Advocacy Groups (C-EOS).
The mission of C-EOS is two-fold:
• To encourage, promote, and support scientific research toward improved treatment, medical care, and cures of eosinophil-associated diseases and their complications.
• To educate the public, patients, families, policymakers, healthcare professionals, and other stakeholders about eosinophil-associated diseases and resulting problems for these patients, including the need for better diagnostic testing, further research for treatments, and a cure.
Eosinophil-associated diseases occur when levels of eosinophils, a type of white blood cell, are elevated in certain areas of the body. Eosinophils play an important role in the immune system, helping to fight off certain types of infections and parasites. These cells respond to triggers, such as food or airborne allergens, by releasing toxins into the affected area. The diagnosis depends on where the eosinophils cause damage. Subsets include eosinophilic gastrointestinal disorders (esophagus, stomach, or intestines); eosinophilic granulomatosis with polyangiitis, aka Churg-Strauss Syndrome, (lungs, sinuses, heart, and various organ systems); and hypereosinophilic syndrome (blood and organs).
Eosinophilic gastrointestinal disorders often render the patient unable to tolerate certain food proteins. Treatments for these disorders include restricted diets or total food elimination, requiring patients to live off an elemental formula (taken either orally or via a feeding tube), and/or steroid treatments.
Due to the lack of information or awareness of these diseases, patients suffer for years trying to obtain an accurate diagnosis and appropriate treatment. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. There is no cure and no FDA-approved treatments.
“Eosinophil-associated diseases are chronic, rare diseases that significantly impact quality of life,” said Mary Jo Strobel, Executive Director for the American Partnership for Eosinophilic Disorders, a C-EOS participant. “As an organization dedicated to serving patients and families who live with these diseases, we are thrilled to join C-EOS and are excited to see so many organizations work together in support of patients and researchers who are paving the way to a cure."
C-EOS launches during National Eosinophil Awareness Week, May 18-24. For more information about the coalition and to see other participating organizations, please visit www.c-eos.org.
About American Partnership for Eosinophilic Disorders (APFED)
American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. www.apfed.org