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APFED

Rating: 4.94 stars   83 reviews 9,133

Address:

PO Box 29545 Atlanta GA 30359 USA

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

2015 Top-Rated Nonprofit
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More Info

713-493-7749
www.apfed.org

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Reviews for APFED

Rating: 5 stars  

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.

 
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Role: General Member of the Public
Rating: 5 stars  

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!

 
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Rating: 5 stars  

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!

 
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Rating: 5 stars  

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!

 
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Rating: 5 stars  

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!!

 
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Role: General Member of the Public
Rating: 4 stars  

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,

 
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Role: General Member of the Public
Rating: 5 stars  

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!

 
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Rating: 5 stars  

2 people found this review helpful

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!

 
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Rating: 5 stars  

1 person found this review helpful

Five years ago, our son’s gastroenterologist finally assigned a diagnosis – and provided us with little in the way of an explanation or outlook. Looking for additional information, we discovered APFED, which provided a wealth of resources and helped us find others who were on the same journey. Today, as a volunteer with APFED, I continue to be awed by the breadth of effort put forth by its committed staff and volunteers. This is an organization that works diligently – and strategically - to serve its patient community at the national, state, and local level, serving as “voice of the patient” in helping shape policy and promote rare disease research funding; provides grants to foster new avenues of research; offers guidance/support, education tools, and platforms to help patients/caregivers connect…and more. We are very appreciative of the work APFED is doing to advance research and improve the lives of those living with an eosinophil-associated disease.

 
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Rating: 5 stars  

2 people found this review helpful

Over 10 years ago my son was diagnosed with EoE. Over the years APFED has been a great support and comfort for our family. The staff and volunteers at APFED go beyond their job to ensure that families have the knowledge needed to make informed decisions about Eosinophilic Disorders.

 
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