Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
73 Reviews
1234.945215
Write A Review
July 17, 2012

more

July 17, 2012

I know at least 3 families who have personally benefitted from APFED. The job they do in making the public aware of Eosinophilic Disorders is second to none. They provide support for the families dealing with this disease. And all of this is done by volunteers! Absolutely amazing!

More feedback...

Will you volunteer or donate to this organization?

Likely

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

Life-changing

When was your last experience with this nonprofit?

2012

July 17, 2012

more

July 17, 2012

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.

More feedback...

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

July 16, 2012

more

July 16, 2012

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!

More feedback...

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

July 16, 2012

more

July 16, 2012

My son was diagnosed with eosinophilic esophagitis over three years age. EoE is a rare disease and I did not know anyone with the disease. I felt very alone in caring for my son. I went to APFED's patient education conference in 2011 and met so many people dealing with the same issues that we were facing. APFED is committed to raising awareness, advocacy, and research. I have volunteered to help in APFED's legislative efforts to raise awareness and obtain funding for research. APFED is growing. I think APFED is taking steps to meet the challenges that growth presents and has a strong vision for the future.

More feedback...

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?

2012

December 28, 2011

more

December 28, 2011

My son was diagnosed with Eosinophilic Esophagitis in 2004, which is when I discovered APFED and the support, education and advocacy that they were able to provide. They, along with our wonderful medical professionals at CHOP and the strong online support community, made an otherwise horrific diagnosis manageable. I went from walking around with the "deer-in-the-headlights" look, not knowing what to do or where to start, to being able to manage my son's disease and keep him healthy.

I thank the amazing volunteers at APFED for helping us get to this point, especially the founder, Beth Mays, who, along with the other volunteers, would spend countless hours supporting anyone who needed it, and fought extremely hard to get the medical community to realize that this was not a laughable disease, and it affected more people than they once realized. Knowing where we were, and how little information was available when we first started out, and knowing how much is available now, thanks to the hard work of the APFED volunteers, I look back in amazement at how much they have accomplished. Never minimize the importance of education and advocacy, as they are just as necessary as research, all of which are APFED's goals.

Some of APFED’s accomplishments include:
Organizing of annual patient education conferences on Eosinophilic Disorders in different locations every summer, which feature seminars given by the foremost specialists in the field. These “Eos Connection” conferences also give patients and their families a chance to meet others who are dealing with the disorders. The conferences are very informative and well-attended.

ICD-9 coding – APFED successfully lobbied for the creation of diagnostic codes (ICD-9 coding) specifically for eosinophilic esophagitis, eosinophilic gastroenteritis, and eosinophilic colitis. These codes went into effect on 10/1/08. If utilized by treating physicians, they will allow the people who are diagnosed with these disorders to be properly counted.

“National Eosinophil Awareness Week” - APFED initiated House Resolution 296, which was passed by the House of Representatives on 5/15/07, and is federally recognized as the 3rd week of May, each year.

Funding of numerous research grants through the Hope On The Horizon Research Fund, including research at: Children’s Hospital of Philadelphia (CHOP), University of Pennsylvania School of Medicine, Cincinnati (CCHMC), Children’s Hospital of Denver, University of California San Diego, Feinberg School of Medicine, University of Colorado School of Medicine, Vanderbilt University, Stanford University, and Riley Hospital for Children Indiana University School of Medicine.

APFED provides a voice to our Eosinophilic community by working with physicians at multiple academic centers, with professional societies, government agencies. They hold a seat on the
• American Academy of Allergy, Asthma and Immunology Lay Organizations Committee,
• American College of Allergy, Asthma and Immunology Lay Organizations Committee,
• AAAAI Eosinophilic Gastrointestinal Disorders Task Force.
• They are also an invited participant in the National Institute of Health’s (NIH) Food Allergy Clinical Guideline Coordinating Committee.

APFED supports physician medical education; Develops educational materials for physicians, patients and support groups; Maintains a support phone line; Assists people with finding a physician or a local support group if needed; Provides a message board on their website for member support.

They are also working on standardizing diagnostic criteria, which would help patients be properly diagnosed sooner, and lobbying for mandated formula coverage nationwide.

They have successfully helped to educate and raise awareness within the secondary care community (GI & Allergy), but are beginning to focus on helping to educate the primary care community as well. This may result in earlier diagnoses, thus decreasing the amount of time people have to suffer with insufficiently treated symptoms.

These are only some of the things that the extremely committed APFED volunteers are involved with. If it weren’t for their tireless efforts, the information available to us would be minimal and the number of medical professionals who know anything about EoE or EGID would be very few. Thanks to their hard work and persistence, it is now better known and understood.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2011

June 30, 2011
1 person found this review helpful

more

June 30, 2011
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)

The Great!

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.

Ways to make it better...

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

i would grow this organization.

June 30, 2011

more

June 30, 2011

When our son was first diagnosed, we were so lost and confused.
When we found Apfed, it taught us so much! Apfed provides the education that parents and older children need. It also promotes awareness in the community. We tell everyone to please donate to Apfed and help us find a cure for
our kids! Apfed saved us!

The Great!

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

having a place to go when our son was first diagnosed. We gained valuable information from their website. Their website really explained in detail what our doctors did not.

Ways to make it better...

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

Honestly, I think nothing because Apfed is doing a GREAT job!

June 28, 2011

more

June 28, 2011

As a mother of a child with EoE I know first hand the need for support and education, not only for my family but everyone we meet. Apfed was there when I most needed to learn more about this disease and encouragement to move forward. The many volunteers that donated time to make sure that I had the necessary resources to be the best advocate for my child was priceless. As a board member I am so very impressed with all the families that I meet that come together to advance the knowledge of this disease and know that dealing with this condition requires support on many levels. Apfed truly lives up to their mission and vision and continues to challenge the community to unite to advance the future knowledge of this disease with the outcome of providing a better quality of life for the families living with this disease.

The Great!

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

My family volunteers yearly to assist with the patient education conference

Ways to make it better...

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

This organization is doing a extraordinary job.

June 28, 2011

more

June 28, 2011

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.

The Great!

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

meeting other families who are affected by EGIDs.

Ways to make it better...

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

ask them to donate more money to research.

June 28, 2011

more

June 28, 2011

When my son was diagnosed with EoE almost four years ago, I quickly recognized my need for a supportive community familiar with the needs if families dealing with EGIDs. I contacted APFED, and they provided me with a gray level if personal support. With the assistance of APFED I was able to start a local support group, the Atlanta/N. GA Eosinophilic Disorders Support Group (GAEOS). Thanks to APFED's support and networking GAEOS has been able to help dozens of families. Thank goodness for APFED.

The Great!

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

My family's life and the lives of the members of GAEOS.

Ways to make it better...

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

Maybe a few website changes for easier navigation.

Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers

3 hours of volunteer time for this nonprofit will...

Assist with research of grant opportunities; proof quarterly newsletters; assist with conference planning; assist with fundraising; and many more opportunities. Volunteer