APFED

Rating: 4.94 stars   83 reviews

Nonprofit Issues:

Health

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  

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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Rating: 5 stars  

1 person found this review helpful

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.

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

As research continues, my son will always personally gain from this organization. Without APFED, I'm not sure others would really understand these disorders.

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

None. It has provided me with all the information I have needed.

 
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Rating: 5 stars  

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.

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

Apfed helped us find other families with children with this disease, and specialists that know how to treat it.

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

help raise more money for research!

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

How did you find this group?

internet searching

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

It helped us find doctors that were knowledgeable in this disease, which greatly increased my daughter's quality of living!

When was your last experience with this nonprofit?

2011

 
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Rating: 5 stars  

1 person found this review helpful

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.

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

Both of my children have eosinophilic esophagitis (EoE) which is a rare medical condition that is virtually unknown to most physicians who meet them for the first time. APFED has helped me to understand the condition which, in turn, allows me to educate medical providers and effectively advocate for their medical care. Networking with patients and physicians at APFED conferences led me to the team of physicians that now provides my children with care that is superior to what they previously received.

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

I cannot think of any changes that I would make to the organization.

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?

2011

 
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Rating: 5 stars  

9 people found this review helpful

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!

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

I have personally experienced the vast array of knowledge that APFED supplies.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-6-01

 
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Rating: 5 stars  

1 person found this review helpful

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

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

It changed our lives.We would have no support or education for our teen son or ourselves.I cannot believe the level of organization and compassion.It far exceeds our expections.

What I've enjoyed the most about my experience with this nonprofit is...

The information I have received has been so helpful.The support and education far exceeded my expectations as well.Thank you APFED!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

 
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Rating: 5 stars  

10 people found this review helpful

My 3 year old son Jaxon was diagnosed with EE in February 2008. He was taken off all food and put on an amino acid based formula. APFED provided much needed support and information; which was critical for our family especially for the first few months. APFED has also helped us connect with support groups in both Arizona and California. APFED helps families appeal to insurance companies to get formula covered, provides outlines for Individual Education Plans necessary for schools, and organizes yearly conferences to educate and support families affected by Eosinophilic disorders.

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

many ways. My son Jaxon had three endoscopies. The last two were clean of eosinophils. Mostly due to the research and treatment funded by APFED. My son has now been clean of eosinophils for over a year, but his condition will be a hurdle his whole life.

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

Update their web site to make it more user friendly and add a section reviewing to top doctors in this field and the programs offered at each of the top hospitals researching these disorders.

What I've enjoyed the most about my experience with this nonprofit is...

The yearly conferences. I have attended in Chicago and San Diego. The information provided and the classes given are wonderful and I have used them for reference many times.

The kinds of staff and volunteers that I met were...

wonderful. They share their experience and knowledge of this condition and really help provide the support I needed when my son was first diagnosed.

If this organization had 10 million bucks, it could...

Pay for the research necessary to cure this condition. Also help needy families attend APFED conferences and help pay for medical bills.

Ways to make it better...

The website was improved so easier navigation and load time.

In my opinion, the biggest challenges facing this organization are...

funding research and educating people. Many people have never even heard of this condition until they or their child is diagnosed.

One thing I'd also say is that...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-5-01

 
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Rating: 5 stars  

9 people found this review helpful

As usual I was undiagnosed for several years. When I was finally diagnosed with eosinophilic gastroenteritis finding information about the disease was very difficult. Apfed not only provides information about the disease it also helped me learn how to live with it. It also supports research for this little known disease. It was truly a life saver organization for me.

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

My life and health

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

 
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