Rating: 4.94 stars 86 86 reviews 9,232
PO Box 29545 Atlanta GA 30359 USA
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.
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.
fund research for Eosinophilic Disorders
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Reviews for APFED
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!
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.
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 person found this review helpful
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 people found this review helpful
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!
When my son was diagnosed with Eosinophilic Esophagitis, I had no idea what resources were available. I needed support and a better understanding about how to manage the disease. What I found from APFED was more than just information but a genuine community, online resources, and advocacy tools. From the APFED.ORG website, I readily gathered templates, additional information, and a place to connect with other families living with eosinophilic diseases. What a gold mine!
APFED is an AMAZING site! The sample 504 plan served as a great tool, when developing our daughter's 504 plan.
Our daughter was diagnosed with EoE at the age of 3. Her sporadic and inconsistent vomiting convinced us that an endoscopy was necessary. Her preliminary results showed eosinophils in her esophagus. She was on a food restriction diet of: cow milk, soy, gluten, egg and apples. Her condition was not improving, in fact, minor scaring was taking place in her esophagus. Since this, we decided to put her on the Flovent treatment plan at the age of 5.
Her first year on Flovent was great! All of the eosinophils in her esophagus were wiped out and/or suppressed. and the rest of her body was pristine. Then, about 15 months into the Flovent treatment, symptoms began arising, again. She had an out-of-routine endoscopy, that showed fungus in her esophagus. The fungus was a side-effect from the Flovent.
She immediately had to take medication to get rid of the fungus. About 3 months later, she had an endoscopy. She was still vomiting, infrequently, but enough for us to know something was not right. This endoscopy showed that she now had eosinophils in her stomach lining. Her treatment plan now included the Flovent for her esophagus, and now an antacid, for her stomach lining.
Our daughter is scheduled for another endoscopy at the end of October, 2015. If there are any signs of eosinophils and/or fungus, she will immediately go on a top 8 food restriction diet. Our daughter is now 7 (soon to be 8), and we are still pretty frustrated, overwhelmed and sad. I definitely cry, a lot, when I'm alone.
It would be very helpful to have a support group in the immediate area of Westchester, NY. Going into Manhattan, is just to practical for a mom of 3, who are 7 and under. I did meet with Julie Forrest, and she is GREAT!!! We are currently in the developing stage for a eosinophilic disease fundraiser, in Westchester County, NY.
Thank you for your existence, APFED!
My daughter was diagnosed with EoE (Eosinophilic Esophahitis) at age two. Our doctor at the time didn't really explain my daughters diagnosis and wasn't very aggressive with it. With out Apfed I would have never known what was intaled with my daughters diagnosis. It helped me find a new doctor that only treats EoE. They also helped me with planning my daughters 504 plan. We recently participated in APFED's Hope on the Horizon walk and got to me new friends. With out APFED and all of their wonderful volunteers, I think I would still be left in the dark about my daughters diagnosis. Thank you APFED and your volunteers for everything you do for us!!
Love apfed.org. I have learned so much about my daughter's diagnosis of Eosinophilic Esophagus and Colitis. This website helped me to write a 504 plan for her; she is a junior in high school. Everything in the 504 plan was accepted by the school. I have also been able to educate the school, friends, and family because of apfed.org.
My 15 year old daughter started having stomach pains in October of 2014. As the month went on, they pains got worse and more often. I would have to take her home from school. We took her to our general practitioner and he scheduled her for an ultrasound and blood work, thinking she had endometriosis. Every thing came back negative. Finally, after two months, we took her to the emergency room where a CT scan and another ultrasound were performed. The only finding was being constipated. She also started vomiting every time she ate. She did a clean out; didn't help. Took her to an OB/GYN and a GI. They both recommended another clean out. Still didn't help and her esophagus started closing off when she ate certain foods, potatoes and strawberries. The GI finally consented to doing an endoscopy and colonoscopy. She was on a ppi at the time. The biopsy came back with 50+ eos in her esophagus and colon; hence, the diagnosis. This was in January 2015. Since then she has gone to the point of not being able to eat anything. She just vomits it. Even if she doesn't eat, she vomits her spit and bile. She has tried an NG tube and an NJ tube for feeding and they have not worked. She was diagnosed with motility problems and gastroparesis the first part of June 2015. She was also passing out or nearly passing out. She was diagnosed with POTS and dysautonomia,
2 people found this review helpful
APFED is a fantastic resource! It has helped me tremendously, from learning about just what eosinophilic esophagitis (EoE) is, to advocacy resources (such as information about 504s for school). It's helped me help my daughter learn about EoE as it is a confusing disorder and is confusing to try to explain to a small child. I'd be lost without this resource!