(The following was taken from the NJ/PA Eosinophilic Information website: http://www.njpaeos.org/links)
Eosinophilic Treatment Centers :
The Clinic Coordinator is Michele Shuker
267-426-7003
v Resources: including fact sheets to help you identify ingredients to avoid while on corn-free, dairy-free, egg-free,soy-free, &/or wheat-free diets, information about patch testing, etc.
v Publications
CHOP currently treats approximately 1200 infants, children and teenagers with an eosinophilic disease - the largest clinical population in the world, with patients from all over the U.S. This clinical population provides an extensive source of data for research. CHOP is also currently (early 2012) leading 11 different research studies related to eosinophilic diseases and they are collaborating with other world class institutions. These advances offer high hopes for children who are suffering. However, ongoing research is expensive. CHOP has a specific research fund set up for this purpose. See the Fundraisers page on the NJPAEos.org website for more information about the fund and how to donate. |
University of Pennsylvania Hospital (HUP)
Adult GI’s who truly understand Eosinophilic Esophagitis (EoE) and can properly diagnose and treat it are seemingly hard to find at this point in time, but thankfully that is changing, especially in our area. There is now an Eosinophilic Esophagitis Clinic at University of Pennsylvania Hospital (HUP), which is actually part of a larger joint effort between sister hospitals HUP and CHOP, The Joint Penn-CHOP Center for Digestive Health.
Dr. Gary Falk (GI at HUP/Penn Medicine), one of the doctors who treat adult patients with Eosinophilic Esophagitis, and Dr. Chris Liacouras (GI at CHOP) also are the co-directors of a new program to “provide inter-disciplinary care (gastroenterologists, allergists, nutritionists and others) together to deliver state of the art care and access to clinical trials to all patients with eosinophilic esophagitis in the Delaware Valley and nationally as they make the transition from adolescence to young adulthood (age 18).” They take new adult patients at the clinic as well.
The section for Eosinophilic Esophagitis on the new website for The Joint Penn-CHOP Center for Digestive Health is http://www.med.upenn.edu/jointcenterfordighealth/EoE.shtml.
To contact University of Pennsylvania Hospital for a GI appt, you can call 215-349-8222 (press 1 for appointments)
or 800-789-PENN (7366).
New patients must call 877-204-9213 to register before setting up an appointment.
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Other U.S. hospitals with EoE/EGID clinics
University of Pennsylvania Hospital
Mt. Sinai Medical Center (NY)
Denver Children’s Hospital
Dr Glenn Furuta
Cincinnati Children's Hospital Center for Eosinophilic Disorders
Children’s Specialists of San Diego
Greenville Hospital System University Medical Center
Dr Jonathan Markowitz,
Greenville, SC.
Mayo Clinic, Minnesota
Children’s Hospital of Boston
Northwestern University, Feinberg School of Medicine, Chicago, IL.
Connecticut Children’s Medical Center
The above treatment locations are not the only ones available. More Drs are beginning to recognize and treat Eosinophilic Gastrointestinal Disorders, so the above list only represents those that we know of at this time.
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Registry for Eosinophilic Gastrointestinal Disorders:
The Registry for Eosinophilic Gastrointestinal Disorders (REGID)
REGID was developed and launched by Cincinnati Children’s Hospital Medical Center (CCHMC); however, physicians from other medical institutions also participate.
http://regid.org/learn/institutions (participating hospitals)
http://regid.org/learn/acknowledgements (those involved)
From Cincinnati’s article about the creation of REGID: “A $1.6 million federal economic stimulus grant is helping Cincinnati Children’s Hospital Medical Center launch the Registry for Eosinophilic Gastrointestinal Disorders (REGID), an information resource that will serve as a valuable research tool for scientists nationwide, and ultimately, around the globe.”
“The Registry for Eosinophilic Gastrointestinal Disorders (REGID) is funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which is a part of the National Institutes of Health (NIH) and the U.S. Department of Health and Human Services, and by the generous donations of families and individuals like you. REGID is a not-for-profit collaboration of medical centers, professionals, families, and individuals dedicated to improving the knowledge, research, and outcomes for people living with eosinophilic gastrointestinal disorders. REGID is not only a national registry of people affected by eosinophilic gastrointestinal disorders but also a forum to enhance the connection of people to resources and research. For more details about the purpose and development of REGID, review the article entitled ‘National Registry to Track Eosinophilic Disorders’.”
“The Registry for Eosinophilic Gastrointestinal Disorders (REGID) is a collaboration of medical centers, professionals, families, and individuals whose mission is to improve the knowledge, research, and outcomes for people living with eosinophilic gastrointestinal disorders.”
“REGID studies are designed to expand our knowledge of eosinophilic gastrointestinal disorders and the outcomes of different treatments. To this end, researchers test specific hypotheses and therapies. The REGID studies section is currently under development. Content about the purpose, funding, methods, and results of ongoing and completed REGID studies will be added as the information becomes available.”
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Non-Profit Organizations:
Please click to view:
APFED (American Partnership for Eosinophilic Disorders) is a non-profit organization that is committed to educating the public and the medical community about Eosinophilic Disorders (EoE, EGID, HES & Churg-Strauss Syndrome), creating awareness, promoting advocacy, as well as raising money for research. It was founded in 2001 by parents of children with EoE & EGID. They have several leaders in the field on their medical advisory board.
There is a lot of helpful information about Eosinophilic Gastrointestinal Disease on their site, including in their new E-Learning Center. If you or your child has been diagnosed with EoE or EGID, you may want to consider becoming a member of APFED. Membership will provide you with access to the current and previous quarterly newsletters, which contain very helpful, informative articles, many written by some of the leading Drs involved in treating EoE/EGID. You can also access the APFED message board and you will receive notification of clinical trials, research, legislation and other news of interest.
APFED’s mission statement, per Guidestar: “American Partnership For Eosinophilic Disorders (APFED) is a non-profit organization dedicated to the patients and their families coping with eosinophilic gastrointestinal disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.”
“APFED provides accurate, up-to-date information on eosinophilic disorders and related problems. Our goals are to increase awareness, educate patients and physicians, increase funding for research and provide support for the eosinophilic community.”
Goals:
“Our mission is multi-faceted: Education, Awareness, Support and Research. Each of these points is equally important to the community dealing with eosinophilic disorders. Without education and awareness there can be no fundraising for research; without research, awareness and education become stagnant; without support, these chronic and painful disorders can become all consuming and the other three points suffer. APFED’s goal is not to tackle one aspect or another, the APFED Mission represents that “We Get It!” We understand what living with an eosinophilic disorder is all about.”
Some of APFED’s accomplishments include:
v Organizing of annual patient education conferences on Eosinophilic Disorders in different locations every summer, which feature seminars given by the foremost specialists in the field. These “Eos Connection” conferences also give patients and their families a chance to meet others who are dealing with the disorders. The conferences are very informative and well-attended. The 2012 conference will be in San Diego, CA and the 2013 conference is scheduled to be held in the Philadelphia area.
v ICD-9 coding – APFED successfully lobbied for the creation of diagnostic codes (ICD-9 coding)specifically for eosinophilic esophagitis, eosinophilic gastroenteritis, and eosinophilic colitis. These codes went into effect on 10/1/08. If utilized by treating physicians, they will allow the people who are diagnosed with these disorders to be properly counted.
v “National Eosinophil Awareness Week” - APFED initiated House Resolution 296, which was passed by the House of Representatives on 5/15/07, and federally recognizes as the 3rd week of May, each year.
v Funding of numerous research grants through the Hope On The Horizon Research Fund, including research at: Children’s Hospital of Philadelphia (CHOP), University of Pennsylvania School of Medicine, Cincinnati (CCHMC), Children’s Hospital of Denver, University of California San Diego, Feinberg School of Medicine, University of Colorado School of Medicine, Vanderbilt University, Stanford University, and Riley Hospital for Children Indiana University School of Medicine.
v APFED provides a voice to our Eosinophilic community by working with physicians at multiple academic centers, with professional societies, government agencies. They hold a seat on the
o American Academy of Allergy, Asthma and Immunology Lay Organizations Committee,
o AAAAI Eosinophilic Gastrointestinal Disorders Task Force.
o They are also an invited participant in the National Institute of Health’s (NIH) Food Allergy Clinical Guideline Coordinating Committee.
v APFED supports physician medical education
v Develops educational materials for physicians, patients and support groups
v Maintains a support phone line
v Assists people with finding a physician or a local support group if needed
v Provides a message board on their website for member support.
They are also working on:
v Standardizing diagnostic criteria, which would help patients be properly diagnosed sooner.
v They have successfully helped to educate and raise awareness within the secondary care community (GI & Allergy), but are beginning to focus on helping to educate the primary care community as well. This may result in earlier diagnoses, thus decreasing the amount of time people have to suffer with insufficiently treated symptoms.
These are only some of the things that the extremely committed APFED volunteers are involved with. If it weren’t for their tireless efforts, the information available to us would be minimal and the number of medical professionals who know anything about EoE or EGID would be very few. Thanks to their hard work and persistence, it is now better known and understood.
Donations to APFED support all of the above. Funding for research is dependent upon education and awareness. Each is equally important. However, if contributors prefer that 100% of their donations go only to research, they can donate specifically to the Hope On the Horizon Research Fund.
All money specifically donated to the "Hope Research Fund" (a.k.a. “Hope on the Horizon”) goes to research. This has been, and continues to be, an available option on their donations page. Research grant applications are expert-reviewed for merit (blinded peer-review process) and recipients must submit a budget detailing that funds are used solely to support research, not administrative costs associated with the research site.
If you are interested in doing a fundraiser for APFED, please contact them for more details: http://apfed.org
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(Campaign Urging Research for Eosinophilic Disease) is a not-for-profit foundation whose hope it is “to raise substantial funding to aid in research and public awareness for this complex disease”.
CURED Foundation was formed in 2005 by the parents of a child with an Eosinophilic Gastrointestinal Disorder. As of February, 2010, they had successfully raised and donated over $2,000,000 for research into eosinophilic disorders, which is an amazing testament to their dedication as well as that of the members of the eosinophilic community who hold the fundraisers.
Per Guidestar, their Mission Statement is “Cincinnati Children’s Hospital – Funding For Research and Public Awareness of Eosinophilic Disorder”.
As of mid-2011, CURED Foundation had already donated over $1,750,000 to Cincinnati Children’s Hospital, and great strides have been made in understanding EoE/EGID as a result. They have said they are willing to donate to other hospitals if the money is going solely to research, per their bylaws. Click here to view a YouTube video by Dr Rothenberg of Cincinnati and CURED.
They have also made generous donations to research at Denver Children's Hospital ($119,250 in 2008 toward research into use of the "String Probe"), as well as University of Illinois Chicago Hospital ($119,250 in 2008) and Northwestern University Feinberg School of Medicine ($60,000 in 2009 & $50,000 in 2010).
As per CURED’s founder: “Each time we make a donation the CURED board collects research on the different hospitals. A vote is taken and that’s where the money is donated. The money must go directly to research and not used for a clinic.” “...even though we have donated to Cincinnati Hospital in the past and may in the future, CURED by laws says we donate 100% of funds raised to research.”
If you are interested in doing a fundraiser for CURED Foundation, please contact them for more details. |
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(Formerly POFAK – Parents of Food Allergic Kids) – Although they do have a free associate membership, this site requires paid membership to access much of the info, but it is worth it. Among other things, they have a plethora of great recipes using alternative ingredients, avoiding common allergens, etc. They have a message board with lots of different forums to choose from, including specific forums for those dealing with eosinophilic disorders. They list product recalls that might affect the allergy community, and so on. They serve the ENTIRE allergy community, which includes those with Eosinophilic Esophagitis and other EGIDs.
The mission statement submitted to Guidestar: “We improve the day-to-day lives of families raising children with food allergies and empower them to create a safe and healthy future for their children."
From their website:
“The Kids With Food Allergies Foundation improves the day-to-day lives of families raising children with food allergies and empowers them to create a safe and healthy future for their children.”
The Parents of Food Allergic Kids (POFAK™) Community is the largest online support community for families raising children with food allergies.
The Resource Center offers practical food allergy management information; label reading guides; insights into social and emotional issues; food substitution information and much more.
The Recipe Collection contains more than 1,200 recipes searchable by category and the allergens you need to avoid.
If you are interested in doing a fundraiser for Kids With Food Allergies,
please contact them for details.
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FAAN (Food Allergy and Anaphylaxis Network)
Per their website, FAAN’s mission is:
“To raise public awareness, to provide advocacy and education, and to advance research on behalf of all those affected by food allergies and anaphylaxis.”
Awareness
FAAN works to build public awareness of food allergy through the media and through education, advocacy, and research efforts.
Education
FAAN staff conducts seminars and training sessions on food allergy and anaphylaxis for patients, school staff, government officials, health professionals, restaurant and industry leaders, and other policymakers.
Advocacy
FAAN works with policymakers on federal, state, and local initiatives in areas such as food labeling, epinephrine availability, and management of food allergies in schools, camps, airlines, and restaurants.
Research
FAAN supports and participates in research studies that lead us to a better understanding of, and a cure for, food allergy and anaphylaxis, and that improves the quality of life of individuals managing these conditions.
The mission statement submitted to Guidestar: “With 12 million Americans - 3 million under age 18 - affected by food allergy, this is a major, worldwide, public health problem. FAAN educates families, schools and child care centers, policymakers, the food industry, government agencies, and the general public about food allergy, while providing funds for scientific and medical research on food allergy and anaphylaxis. FAAN serves as the communication link between the patient and others.”
please contact them for details.
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