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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

101 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

I've become acquainted with APFED through a lifelong friend whose son has EOE. I've been so impressed by the support APFED offers to those affected by eosinophil-associated disorders. My friend's son's life has been so positively affected by meeting other kids with EOE at the annual conference and he's developed important friendships with kids of a wide range of ages. My friend has also benefited from the community APFED fosters among parents. I've contributed to a number of fundraisers for APFED and have been impressed by the promise and results of the research APFED funds; in the years since my friend's son was diagnosed, APFED has funded research resulting in new treatment options.

Donor

Rating: 5

APFED is a thoughtful organization of dedicated individuals that is vital to the lives of those living with eosinophil-associated disorders. By joining families and scientists in a unique community, APFED provides unmatched resources in the way of patient and family support, education of the public, advocacy, and funding essential scientific research towards a cure for conditions we have yet to fully understand, but must strive to understand. I have felt their direct impact as the friend of a child with EoE, and as a physician. I am thrilled to be able to support APFED and their mission.

Board Member

Rating: 5

I am SO proud of all that APFED has accomplished and continues to do. Our website is a leading source of up to date research and important information for patient community and physicians alike. And the Board, staff, and volunteers truly care about each of our families.

Previous Stories

Board Member

Rating: 5

APFED’s mission is to embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases. It accomplishes this by focusing on advocacy, research, support of families, and education and awareness.
My son was diagnosed with EoE in 1994, long before this patient advocacy group was created to help deal with this disease. I have volunteered for APFED for many years and joined the board recently in part to thank this organization for all of the work they do to help families like mine deal with this rare condition.

I hope that every family that is dealing with one of these eosinophil-associated diseases will find APFED and take advantage of all of the resources they have to offer, including the annual conference. Even though my son had already been living with EoE for many years when I attended my first EOS Connection conference, it and APFED changed our lives.

Dan G.1

General Member of the Public

Rating: 5

I have relationships with a number of voluntary health organizations, but have not experienced benefit like what my family has received from APFED. The community of families built at and around the annual EoE conference is amazing. The information APFED brings to families (like that of my nephew, who suffers from EoE) is incredibly clear and helpful. And there's all too little research underway toward treatment and cure of EoE, so everything APFED does to finance and influence and research makes a tremendous difference.

Donor

Rating: 5

APFED is a FABULOUS charity. My son was diagnosed with eosinophilia gastritis recently and I didn’t know where to turn. I discovered APFED and was so thankful. They are a wealth of valuable information. In addition, I loved seeing that APFED uses funds from donations to offer grants to reputable hospitals all over the country to conduct research. There is currently no cure for Eosinophilic gastritis , but with APFED’s hard work, hopefully one will be discovered through their funded research. This is one charity that I will continue to donate to. They are transparent and have great ratings!

Norman A R.

Client Served

Rating: 5

From the time our grandson was born until he was about two he was labeled ‘failure to thrive.’ He hardly ate and hardly grew. Then he was diagnosed with Eosinophilic Esophagitis. Not fun, of course, but at least we were starting to learn about his condition, symptoms and causes. Then his parents learned about Apfed and began to feel some hope, which our whole family shared. Since then–six years later–Apfed has been a continuing source of information and support, for which we are all grateful–especially Jack.

General Member of the Public

Rating: 5

APFED provides support to the community affected by eosinophil-associated disorders through its annual conference. My nephew with EoE has told me about going to the conference and how important it is for him to meet other kids like himself. It's one of the highlights of his year and has been instrumental to our whole family as we feel part of a broader community.

Misty Kean M.

Client Served

Rating: 5

This organization has helped me so much. From learning how to work with her school and getting a 504 to how to tell family members! Amazing organization and I love the conferences!

Juliet R.

Board Member

Rating: 5

APFED has been with my family from very early in our journey with Eosinophilic Esophagitis (EoE). The organization provides community and educational materials to families like ours, who are lost and alone at the time of diagnosis. Without APFED advocating on our behalf with government agencies, legislators, hospitals, and pharmaceutical companies, it would even more difficult to manage EoE. We need the outcomes of research that APFED funds; we depend on the legislation mandating coverage of our medical supplies; we lean on our community every day. I'm thrilled to have joined the board of directors so I can contribute to this work.

Previous Stories
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Client Served

Rating: 5

APFED is an amazing resource! I don't know how we would manage my son's care without the information base, resources, and community APFED provides. My son looks forward to the annual conference all year--he makes "EoE friends" and I learn about advancements in research that inform our treatment plan. I have raised $35k for APFED because they drive innovative research. We hope for a cure!

Anonymous419

Client Served

Rating: 5

The integrity and persistence of this organization as they represent families like mine in their advocacy efforts is unparalleled within our community! I also appreciate their collaboration with professional organizations to pave the way in funding research through their grant program and furthering education within the medical and patient communities.

General Member of the Public

Rating: 5

Education is empowering. When I think of Apfed.org I think of how this
Group has help me educate future teachers in America. I feel blessed and honored to have this opportunity. Thank you Apfed.org.

General Member of the Public

Rating: 4

APFED is an amazing resource and timeless repository of information! The website is full of great information to help my family.

Stephanie91

Client Served

Rating: 5

A few years ago I had not heard of APFED. I knew my youngest child had this disease called eosinophilic esophagitis (Eoe) but I only knew what his GI doctor told us about it. Through a wonderful chain of events my son was referred to a new immunologist and dietician team who met with my son and were telling me all types of treatment options that seemed radical. They also referred me that first day to APFED.org where I could read more about the disease. I was shocked to discover the we had spent years only treating symptoms (which often landed my then 8 year old
In the hospitals) and not the actual cause of the disease. Through apfed I was able to clearly see what I could do for my son at home, at school and begin to avoid all of the hospital stays. Through their scholarship programs for first timers I was able to travel to Philadelphia within months of learning of the organization, to attend their yearly conference. I had never met any other children like my son or spoken to any other parents whose children had Eoe. It was both eye opening and heart breaking to me as a parent as the panel of teens and adults with Eoe spoke about their symptoms and used very similar words as my son who often would scream in pain. Up to the weekend I had allowed a doctor who was not knowledgeable dismiss my sons symptoms and pain levels. I thought by ignoring his "drama" was helping him to get through and stop complaining. When I heard those teens and adults describing feelings of being stabbed in the heart during a flare I cried. That weekend changed our lives. I knew what needed to be done and had some ideas how to start. In the years since I have been able to travel to Denver for another yearly conference as well as attending a smaller, local break out sessions sometimes offered. We are a few years out from this eye opening introduction to apfed and I owe them so much. A representative once did a conference call with the school district to help ensure my son got the IEP he needed and was entitled to, they send out education packets to my sons doctors so they know what he has and how to treat, they give us the very latest treatment options. Most important was learning we were not alone and my son meeting kids like him! My child is feeding tube dependent and we had never met one other child like that. Now my son has a ton of other buddies like him! I can never thank APFED enough for what they did to help me
Learn to be the best advocate o could to ensure my son received the treatment he needed and deserved!

Previous Stories

Client Served

Rating: 5

I can hardly believe that it has been almost a year since I was referred to APFED. My son had been diagnosed with EoE a few years previous but both his doctor and myself were not knowledgeable about the true nature of this disease. My son (now 9) was constantly sick. I was shocked as I began to ready through APFED literature and watch their YouTube videos. These people were describing my son!!!

I was blessed to be able to attend the APFED conference last year in Philly. I was overwhelmed to say the least by the amount of information available. I left there armed with a real plan of what I needed to do for my child. On my return home we met with his dietician and his allergist (who were new for us and had told me about APFED) and what he was saying about treatment options made sense. My son does have a feeding tube. Prior to learning from APFED what that actually entailed I was beyond sated of this step. I can now say it has been a blessing. My son is now growing and no longer has symptoms of malnutrition.

As if that isn't enough, APFEDs step by step school resource info for IEPs has been a lifesaver. It is very clear and comprehensive about reasonable accommodations the school can make to help my son be a successful student. There are so many aspects of APFED that I have used or referred friends, family and teachers to that I know I am missing some part that I use. Just know that you will never be alone in any aspect of this disease once you come to the APFED website!!!

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General Member of the Public

Rating: 5

Apfed is one of those most helpful and knowledgeable organizations Ive ever dealt with. When my daughter was first diagnosed with EoE, they reached right out to me. They offered information, support and friendship. Such an awesome team of people!!!

Susan McArthur

Board Member

Rating: 5

A charity with HEART that puts patients FIRST! So grateful our family has this organization to turn to for support and information.

General Member of the Public

Rating: 5

We just went to our first APFED conference in San Diego. It was such a great experience! We learned so much and met new families, got safe foods, snacks and samples and really enjoyed our time! Besides the wonderful conference they put on, APFED has a great website to refer family and friends to re eosinophilic diseases. Besides all of the before mentioned, we are thankful for the fundraising they do to raise awareness and find a cure!

Client Served

Rating: 5

My family just went to our first APFED conference in San Diego and I am pleased to say it exceeded all our expectations. We learned so much and everyone was very nice and helpful. Our teen son met others like him for the first time in his life and made important friendships that continue online. We all felt supported in our individual journies of learning how best to cope with our child's disease. And the most valuable take away - we collectively left with a renewed sense of hope.

I highly recommend APFED to anyone struggling wtan eosinophilic disorder. They are a true blessing.

Client Served

Rating: 5

APFED has helped me deal with my EoE in multiple ways, both as a resource for information on the disease and also as a community. I attended the patient conference this year and it was an amazing experience that gave me a network for support, which is something I haven't had in the 2+ years since my diagnosis. This is by far the most informative website and the support team behind it is incredibly responsive. The EOS connections support page also helps to get questions answered and serves as a reminder that I am not alone in this fight. Thank you APFED!

1

Client Served

Rating: 5

I think that APFED offers a lot to the community. As a patient with EoE I have developed great relationships with other patients with my disorder. I look forward to their conference every year and I have attended the past 10 conferences. It is a great experience and I learn a lot.

2

General Member of the Public

Rating: 5

My nephew has EoE, and has benefited so much from Apfed. He attends the annual conference (I have, too!) and values the time he is able to spend with other kids that have similar disorders. I have learned so much through their education at the conferences, newsletters and their staff is wonderful. My experience with this nonprofit has exceeded all my expectations, and I will continue to support their efforts!