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: 4 stars  

The people at APFED work tirelessly to bring much needed attention to a rare disease. They provide support for those who are affected by this disease, EGID. Many families have been helped by the volunteers at APFED.

Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Likely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

APFED has been an exceptional resource - both from the point of view as a parent with a son with an EGID and later an advocate for insurace coverage change. APFED's annual conferences are very informative and help to keep us up to date on current research in the field. In addition their volunteers are extremely helpful through all stages of dealing with EGIDs. Thank you!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

My patients have repeatedly praised the help and guidance they receive from Apfed.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

2 people found this review helpful

During my lifetime, I have worked with, supported and benefited from numerous non-profit organizations. Few, if any, have taken patient advocacy and disease awareness to the level APFED has done. APFED has addressed the needs of patients, clinicians and researchers. They work on a local, national and even international level to advance the understanding of eosinophilic disorders. This past summer I attended the annual conference and was able to feel the direct impact the organization has on so many patients lives.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

My adorable nephew has been diagnosed with EOE and APFED has been a great resource for his mother as well as the rest of our family. What they are doing to help find a cure is amazing. Hopefully soon there will be a cure for all of the amazing people out there that have been diagnosed.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

APFED is an invaluable resource to those of us who are affected by an EOS disorder. Whether you are the one affected, or have a family member who is, there is a wealth of information available on APFED's website. I have used it to help find the right doctors for my son, support from their chat rooms, and for looking up symptoms to see if what my son is going through is normal for an EOS kid. I have also done various fundraising events for APFED, I believe in it that much. Together, we can find a cure!!!!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

Apfed is a priceless asset to the EOS affected community nationwide. Through education, resources, facts, and bringing people together, Apfed strives to help everyone coping with EOS disorders. Apfed is also a great organization to team up with to raise money for the cause. They are easy to work with and very helpful!

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

APFED is great cause it helps families learn so much about the disease. If it were not for APFED and the amazing workers me and my family would be so lost on the disease. It has been the biggest help ever for me and my family. I thank GOD for those amazing people that offer to help us and our amazing families. They also have so much intersting and research stuff.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

APFED is wonderfully supportive and proactive organization for those of us who have unsuspectfully found ourselves belonging to the eosinophilic family. I met my first eo mom friend on the chat board - meaning the first person I could talk to that 'got' what I was saying and was going through with my son. That was five years ago and I've since met other families that have become friends as well. This year, I started to volunteer for APFED because I'm thankful for their continuing goal to keep us up-to-date on current information, for their campaigning on behalf of eosinophilic disorders, for their conferences, for their fundraising for much needed research, for being there in whatever capacity each of us may need. I wanted to be a part of it and help contribute. The staff members I have met are so dedicated and I am in awe of their dedication and generosity of the hours and hours they volunteer to APFED all in the name of helping even just one more patient. Thank you, APFED :)

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
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.

Was this review helpful? 
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

Was this review helpful?