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APFED

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Nonprofit Overview

Causes: Health

Mission: 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.

Results: Over this past decade, APFED has made a huge impact in all areas of its mission: education, awareness, support, and research. - Educated patients, families, healthcare providers, and the public about eosinophilic disorders and how to manage them. - Initiated groundbreaking advocacy efforts on the state and federal levels to help families secure insurance coverage for medical foods, and encouraged our governments to direct more funds to eosinophilic research. - Played a critical role in encouraging the development of comprehensive guidelines for the diagnosis and treatment of eosinophilic esophagitis. - Led the effort to develop ICD-9 codes for eosinophilic gastrointestinal disorders, which are crucial for insurance coverage of therapy and for ongoing research. - Authored the bill for National Eosinophil Awareness Week (third week of May) and worked with the community to get it passed. - Participated in the NIH working group that was assembled to define unmet research needs for eosinophilic disorders, and we were instrumental in publishing a report on these findings, charting the course for scientific breakthroughs. - Thanks to the generosity of our supporters, APFED’s Hope on the Horizon Research Fund has granted nearly $1 million in support studies that are leading us to a better understanding of eosinophilic disorders, less-invasive diagnostics, and improved therapies. We have teamed up this year with the Allergy, Asthma & Immunology Education and Research Organization, Inc. (a supporting organization to the American Academy of Allergy, Asthma & Immunology, Inc.) to offer a APFED/ARTrust™ Pilot Grant Award. This collaborative award will allow investigators from a variety of disciplines to initiate new projects relevant to eosinophilic disorders, focusing on the development of ideas which are likely to lead to future external funding.

Target demographics: fund research for Eosinophilic Disorders

Geographic areas served: Global

Programs: HOPE Research Grants Trainee Grants Education Programs Advocacy Programs

Community Stories

29 Stories from Volunteers, Donors & Supporters

10

Client Served

Rating: 5

My 3 year old son Jaxon was diagnosed with EE in February 2008. He was taken off all food and put on an amino acid based formula. APFED provided much needed support and information; which was critical for our family especially for the first few months. APFED has also helped us connect with support groups in both Arizona and California. APFED helps families appeal to insurance companies to get formula covered, provides outlines for Individual Education Plans necessary for schools, and organizes yearly conferences to educate and support families affected by Eosinophilic disorders.

9

Client Served

Rating: 5

As usual I was undiagnosed for several years. When I was finally diagnosed with eosinophilic gastroenteritis finding information about the disease was very difficult. Apfed not only provides information about the disease it also helped me learn how to live with it. It also supports research for this little known disease. It was truly a life saver organization for me.

9

Client Served

Rating: 5

My daughter was diagnosed with EC, EG and EE in August of 2009. It's been an overwhelming diagnosis but finding APFED has been a huge blessing. Our doctor at Mayo Clinic actually gave us the website when they gave us the diagnosis. We have found so much helpful information on the website. My daughters favorite shirts are her eos shirts we ordered from the website.

9

Client Served

Rating: 5

My 9-year old daughter was diagnosed just 3 months ago with Eosinophilc Gastroenterits. What a frightening thing for a mother to hear. What is it? What does this mean? What do we do? I found APFED through some information our allergist provided to me. What a relief to know we weren't alone. I had never heard of this before, knew no one with the condition, had no idea how to help my daughter. While it currently looks like her allergies are no where near as severe or pervasive as others with this disease, we are in the infancy stages of dealing with it, identifying allergies, and learning what kind of modifications we need to make. I am so excited to be attending the annual conference in a few weeks so that I have an opportunity to learn more, hear about the latest research, learn tips on coping with this disease and hear what the future might hold for us.

18

Client Served

Rating: 4

My son is 6 and has EE & EC, unfortunately when he was diagnosed @ 4 yrs the Dr did not offer much info and we had NO idea the extent of how this would change our lives. We were told to avoid a few foods and that was it. When he continued to have frequent illness and did not grow, I began to research on my own and discovered APFED. They directed me to a local group, and I cannot tell you the relief I felt to speak to people with the same experiences! Trying to explain to friends and family is impossible, and the APFED videos were a big help when family members informed me that I was making bad decisions in regards to my son's health. They've since kept their opinions to themselves, and we have surrounded ourselves with other families that are sharing in the same struggles. I can't WAIT to attend the conference, to meet moms I feel are friends, and to learn the latest research and treatment has to offer, so that I may offer my son a better future with food IN it!

19

Client Served

Rating: 5

Both of my boys were diagnosed with eosinophilic esophagitis in April 2008. APFED's educational pages helped our extended family understand the medical condition and what they could do to support us as we initiated a difficult to maintain treatment plan. I attended APFED's annual patient education conference in July 2009. That weekend was one of the most amazing experiences of my life! Some of the top physicians and researchers in the fields presented information that has enabled me to advocate more effectively for my children's needs. Hearing the stories of other families with similar circumstances helped me feel less alone. I simply cannot imagine how difficult it would be to manage my children's medical needs without APFED!

17

Client Served

Rating: 5

My son was diagnosed with a rare disease called eosinophilic esophagitis. Even his own doctors had no idea what this was or how to treat him. With APFED's help we not only educated his doctors but also have educated thousands of people in the community that had never heard of this before. It is only through awareness and education that we can find funding for research and ultimately a cure for the people who suffer from this. Through Apfed, I have met so many wonderful families that are going through this and I now know we are not alone in this fight. I thank God every day that Apfed goes out and fights for funding, educates the physicians so they know to look for this, and helps families who are struggling with this diagnosis.