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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

Client Served

Rating: 5

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.

Margie4

Client Served

Rating: 5

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.

Yael W.

Client Served

Rating: 5

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!

1 Jt D.

Client Served

Rating: 5

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)

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

My son was diagnosed with eosinophilic esophagitis when he was 3. It was a long road to finally receive his diagnosis and treatment. APFED has become a staple in my life. I received more information on this site than from my son's physicians. My family and I will be attending our 1st APFED conference this summer and we can't wait.

Client Served

Rating: 5

Apfed has been invaluable in helping us deal with our daughter's chronic disease. Their website alone is a tremendous source of information, covering topics from research, to education, to advocacy.

1

Client Served

Rating: 5

APFED is an organization that is vital to the education and support of families dealing with eosinophilic disorders, as well as treating physicians. Education, advocacy and the support of research have, together, increased the availability of appropriate medical treatment and the quality of life for patients.

9

Client Served

Rating: 5

My 22 month old son was diagnosed with EE at 16 mos old. There is not a whole lot of information available to parents who are trying to learn about this disease but through APFED, I was able to educate myself and my family on what our little guy was dealing with. This is a great organization that deserves additional funding and recognition. Go APFED!

1

Client Served

Rating: 5

Our thirteen year old boy has EE.When our doctor gave us the diagnosis he told us to research it on the internet because there wasn't alot known about the disease.We were left feeling alone and scared.I started researching and found APFED.It saved us.We found the education and support we needed to help our son and they helped us find him the best medical care possible.Without APFED I would have gone into a depression and not have been able to take care of my son like he deserves to be cared for.They provide a conference every year full of support and new research on the disease.We are attending our first conference in Denver in a few weeks and my teen is excited to meet teens with EE for the first time.He will finally have support from other teens and this is all due to APFED.Thank you