Patient advocacy group offers full support
Atlanta, GA. (October 8, 2014) – The American Partnership for Eosinophilic Disorders (APFED), a patient advocacy group based out of Atlanta, is pleased to announce its support of new federally funded research that will focus on eosinophilic gastrointestinal diseases (EGIDs).
Eosinophilic-associated diseases are chronic inflammatory disorders characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places in the digestive system, tissues, organs, and/or blood stream, which causes inflammation and damage. When inflammation is in the esophagus, the condition is known as eosinophilic esophagitis. When it is in the stomach, the condition is called eosinophilic gastritis. When it is in the colon, it is known as eosinophilic colitis.
The 5-year, $6.25 million grant, made possible through awards by the National Institutes of Health to expand the Rare Diseases Clinical Research Network, will allow for the formation of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) to research eosinophilic and allergic disorders and to train investigators in how to conduct clinical research. CEGIR will focus on research projects involving patients with eosinophilic esophagitis, gastritis, and colitis. The involvement of patients from the beginning is crucial to the success of the Consortium, therefore a unique, key component of the grant includes CEGIR’s collaboration with patient advocacy groups to ensure the needs of the patients are recognized and met.
The American Partnership for Eosinophilic Disorders (APFED), the world’s largest not-for-profit patient advocacy group dedicated to education, advocacy, awareness, and research for eosinophil-associated diseases, is working closely with CEGIR to address the clinical problems of most importance to patients and their families. APFED has committed to full participation in CEGIR, including financial support.
To further strengthen support for research and advocacy efforts pertaining to eosinophil-associated diseases, APFED led efforts to organize the Coalition of Eosinophil Patient Advocacy Groups (C-Eos, www.c-eos.org), which was established in May, 2014.
Marc Rothenberg, MD, PhD, director of the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s will serve as principal investigator of the NIH grant, and Glenn T. Furuta, MD, director of the Gastrointestinal Eosinophilic Diseases Program at Children’s Hospital Colorado and professor of pediatrics at the University of Colorado School of Medicine, will act as administrative director and site investigator. Investigators from additional sites will also participate in CEGIR including Bern University Switzerland, Children’s Hospital of Philadelphia, Lurie Children’s Hospital, the National Institutes of Health, Northwestern University, Rady Children’s Hospital, Riley Children’s Hospital, Tufts University, and the University of North Carolina.
By working together collaboratively, these sites have access to a comprehensive database of more than 8,000 patients.
“These are painful, lifelong diseases that make it difficult or impossible for individuals to eat many or all foods,” says Rothenberg. “Individuals with these diseases often have to fuel their bodies by drinking costly formulas. We will collaborate with researchers, patients and patient advocacy groups to better understand, treat and educate about these diseases.”
“CEGIR presents an outstanding opportunity for experts from across the world to perform collaborative clinical research and to train a new generation of investigators,” Furuta said. “Research will be guided by patient advocacy groups and results from these studies will bring transformative changes to the care of patients with EGIDs.”
“We applaud the NIH for recognizing the need for improved diagnostics and therapeutic treatments for patients with eosinophil-associated diseases and for allocating critical resources to this Consortium,” said APFED President Dr. Wendy Book. “APFED has long advocated for research of these diseases and it is a dream come true to have the nation’s most esteemed investigators come together to partner on efforts in tandem with patient advocacy groups. We are honored to collaborate with the researchers and NIH institutes on this landmark project and we embrace the opportunity to work with other patient advocacy groups and with CEGIR to bring about a greater understanding of these diseases and the patients who develop them.”
Learn more: NIH funds research consortia to study more than 200 rare diseases
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About American Partnership for Eosinophilic Disorders (APFED)
American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s 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