APFED

Rating: 4.95 stars   73 reviews

Issues: Health

Location: 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
2014 Top-Rated Nonprofit
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EIN 76-0700153
713-493-7749
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Community Reviews

Rating: 5 stars  

APFED has been a blessing to our family, as we deal with EoE with our three children. The conferences are a great resource to meet with other families and doctors and understand the disease and treatments from a variety of sources. Lately, APFED was critical in providing and sharing information related to Legislative activities in other states to allow us to successfully pass similar legislations in Nebraska. Without this critical resource, we wouldn't have been able to advance critical assistance to assist in the care of children. APFED is very responsive with information requests through e-mail and other social media venues, maximizing communications.

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Rating: 5 stars  

I am a volunteer who raises money for apfed. but MOST important I am a mother of a child with EGID. these apfed support groups help everyday by giving muh needed support and guidance through this rare condition

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Rating: 5 stars  

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!!!

If I had to make changes to this organization, I would...

Have a section for single parents dealing with EGIDs. There are unique things that singles have to navigate (courts, visitation, juggling work when eos child is sick and no significant other to help).

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

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1 previous review
Rating: 5 stars  

APFED has changed my life and my youngest child's life! When he was diagnosed with EoE a few years ago I has never heard of it. Unfortunately, although his doctors had heard of EoE and diagnosed him, they (mostly GI and primary) were really not educated about the symptoms and what can be done to try to get some control over the disease. For years we have gone along blindly with doctors who would put him on steroids, take him off steroids, biopsy, repeat as they disregarded his complaints. Only 6 weeks ago I was referred to APFED. I cried when I realized that this group knew my child! He was not making things up or being sensitive and was in fact, in pain. I was allowing it to continue through my ignorance! I immediately ordered the children's book for my son and his classroom to better explain EoE. I also ordered brochures that I have handed out to everyone who deals with him so they can get a picture of what is going on and go to site themselves for more information. As a direct result of APFED my son now has his school (principal, nurse, counselor, nurse, etc) on his side; they realize his symptoms are real. His pain is real. This disease is serious! I cannot thank APFED enough for what they have done for my son! Knowledge is power! Although I admit to being overwhelmed, armed with this new knowledge I have already become a better advocate for my sons health so that he will no longer face day after day of pain. My only regret is not finding this site sooner.

If I had to make changes to this organization, I would...

Have brochures at all GI and allergist offices.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

APFED is a wonderful and highly recognized nonprofit organization that has benefited my family for years. When my three children were newly diagnosed with Eosinophilic diseases we couldn't pronounce the name much less understand what the condition meant. I found an APFED flyer at our pediatric gastroenterologist's office that led me to their website. Once I got online and took a look around, I was encouraged to get involved with APFED. My main reason was because I felt like APFED knew how important awareness of Eosinophilic Gastroentestinal Disorders is to me and my family. Research for a cure is huge as well, but if people aren't aware of Eosinophilic diseases then they are less likely to donate to help find a cure. Another thing that I love about APFED is their desire to educate both families and medical professionals.

If I had to make changes to this organization, I would...

Bring some of the children and families effected by Eosinophilic diseases in as ambassadors for APFED. We need to show the faces of Eosinophilic diseases. Take advantage of our teens who have had to endure life in school with these diseases. Implement a "big brother or big sister" approach for our newly diagnosed families. I have many ideas.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

My son was suffering terribly with a mysterious malady that no doctor seemed to be able to nail down. We were misdiagnosed 7 times by as many different specialists. Every time we saw a new doctor, my son would get a different title, and a different therapy. Nothing ever worked. I was desperate to help him feel better, and spent a good bit of time online, researching as much as I could from the little I knew. I eventually found the APFED website, and a detailed description of what my son's major symptoms were. Over time, I would continually come back to the APFED site to confirm my suspicions. I even made contact with someone in the disease community, who helped me tremendously by phone and email. They turned out to be a representative of APFED! My son has since been diagnosed with the condition I suspected, and APFED has continued to be a huge resource for us as we navigate the course of his disease and treatment.

I've personally experienced the results of this organization in...

getting my son diagnosed, and a treatment center being established in my region.

If I had to make changes to this organization, I would...

Make the website more user friendly for those seeking more in-depth research and information past diagnosis. The website helped us incredibly to get diagnosed and understand what current treatment options were. However, my child seems to have a difficult case, and I would like to have easier access to any info that is more specific to hard-to-treat cases. If that type of info is on there, then I can't find it, so that needs to be changed. If it's not on there, I would love to see this type of info be added

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

How did you find this group?

By chance! Just googling my son's symptoms!

What, if any, change in your life has this group encouraged?

How to get my son the best care and treatment available to him.

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Rating: 5 stars  

I was diagnosed with Eosinophilic Gastroenteropathy when I was 12. 8 years later, APFED is still my go to resource. When I was first diagnosed, my mom and I spent a lot of time going through the information and resources on the APFED web page. It has always been well written and extensive, offering information for the most basic cases and new patients to those with more complex issues. As years have passed, they have updated their information and various resources as new information and experiences have developed, including tips on how to get formula covered by insurance and a specific page for kids with age appropriate material and explanations. I keep up to date on their legislative efforts as well, and the work they do is truly remarkable. I have also had the pleasure to attend the last two Eos Connection Patient Conferences. They are fantastic, full of information and support. I plan on attending every one that I possibly can. The last conference, I was also able to contribute as a volunteer. The primary people involved were fantastic to work with and they treated all their volunteers very well. I am so thankful that APFED exists and for all that it does for people with Eosinophilic Disorders.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

My son was diagnosed with Eosinophilic Esophagitis when he was 11 months old. My husband and I started doing internet research and found APFED. We have had board members and volunteers contact us to see if they could offer any assistance. They have helped us find Doctors who are knowledgeable about the disease, helped us get insurance to cover the medical food our son needs to thrive and grow, and also introduced us to different support groups. It's not easy to have a chronically sick child but having support through an organization like APFED has made it a little easier.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

After my son was diagnosed with Eosinophilic Esophagitis APFED was an amazing resource that helped my husband and I learn far more about the disease and how to manage it in our every day lives. APFED is a great organization for anyone living with EGIDs!

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

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Rating: 5 stars  

1 person found this review helpful

Apfed's work made it so children like mine can receive insurance coverage for the very important elemental formula they need to survive.

Without APFED we'd have no real voice. Thank you APFED.

My best,

John (Aidan's daddy)

I've personally experienced the results of this organization in...

I've noticed how hard APFED's folks work to bring awareness and support to our rapidly growing EGID community.

If I had to make changes to this organization, I would...

i would grow this organization.

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Rating: 5 stars  

My son was diagnosed with Eosinophilic Esophagitis 2 1/2 years ago. APFED has been a very valuable resource for us. The annual conference is great in that it provides my son an ability to spend time with other teens who have EoE. He now looks forward to this every year.

I've personally experienced the results of this organization in...

meeting other families who are affected by EGIDs.

If I had to make changes to this organization, I would...

ask them to donate more money to research.

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