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63 Reviews
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April 18, 2014

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1 previous review
May 29, 2013

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,... more

April 18, 2014

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!!!

Ways to make it better...

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).

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?

2014

May 29, 2013

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.

Ways to make it better...

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

Have brochures at all GI and allergist offices.

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?

2013

June 10, 2013

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June 10, 2013

This organization has been a life saver to say the least! I was at a complete loss until I discovered such a welcoming and helpful organization. Not only have questions been answered, but lifetime friendships have been formed. This organization is filled with real people who live the same lifestyle... They "get it" and been through it. I'm not good with words, wish I could better describe how amazing everyone is, how helpful, how life changing this organization truly is. I'm so very thankful to know I'm not alone in this... To know there are others living the same and willing to help as much as they can, even going out of their own way to help. I have never known an organization so passionate about helping others and making others know and feel that they are not alone in their journey. To add to their wonderful warmth, they also provide medical updates and helpful education for not only families, but for others to understand our lifestyle. APFED is amazing and we would be lost without all those behind the name of the organization. Thank you APFED for being a part of my family.

Ways to make it better...

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

N/a

More feedback...

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?

2013

May 30, 2013
1 person found this review helpful

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May 30, 2013
1 person found this review helpful

A friend referred me to APFED's website after my daughter was diagnosed with Eosinophilic Esophagitis three years ago. I was completely overwhelmed at the time of her diagnosis. APFED quickly became an organization I hold dear to my heart. Their dedication to supporting families and creating awareness truly goes above and beyond.

Their volunteers inspired me to want to help. With their guidance, I started a support group for local families dealing with eosinophilic disorders. In addition, they assisted me with hosting a walk to benefit APFED's Hope on the Horizon Research Fund. The help I received to make the walk a success was truly amazing. It felt great to give back to an organization that gives so much to others.

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?

2013

May 29, 2013

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May 29, 2013

When my grandson was diagnosed with an Eosinophilic Disorder in December 2012 an internet search led us to APFED.org. American Partnership for Eosinophilic Disorders has since been been a tremendous help to my daughter. The information listed on their website helped us understand more about this rare condition. It helped her communicate questions, concerns, suggestions to her son's various physicians. It also gave my daughter a place to connect with other families dealing with this disorder. That alone is extremely valuable. Both my daughter and myself found a "purpose" in volunteering to help American Partnership for Eosinophilic Disorders. My daughter lives in a rural area and has enjoyed doing editing work for APFED. I just completed a thirty day endurance event to create awareness of Eosinophilic Disorders. In appreciation for our efforts APFED help defray travel expenses so that my daughter and grandson could be a part of APFED's Day on Capitol Hill during National Eosinophilic Awareness Week. My daughter and grandson were able to speak with several members of Congress to bring awareness of this disorder and to lobby for research funding.

Ways to make it better...

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

Hope they can obtain fundraising permits in Washington, D.C.

More feedback...

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?

Definitely

When was your last experience with this nonprofit?

2013

May 29, 2013

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May 29, 2013

My 9 year old son was diagnosed with an eosinophil associated disease in December 2012. The only advice his GI gave us was to visit apfed.org. Their website led me to online community of other parents of children with eos diseases and I quickly made many "friends" who could relate to what we are going through and offer real-life experiences and advice. Apfed's website also offered a wealth of literature on various topics involving eosinophil associated diseases. I began volunteering for Apfed (a few hours a week from home) a couple of months ago and this has led to even more amazing connections around the country. My son & I were recently invited to participate in Apfed's lobbying day on Capitol Hill! The initial diagnosis is heartbreaking and stressful and Apfed literally saved me. The people I have met through this organization have truly saved my son's quality of life. I honestly don't know where I'd be without their knowledge and support.

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?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

May 29, 2013

more

May 29, 2013

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.

Ways to make it better...

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.

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?

2013

April 10, 2013

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April 10, 2013

APFED’s mission is to embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases. It accomplishes this by focusing on advocacy, research, support of families, and education and awareness.
My son was diagnosed with EoE in 1994, long before this
patient advocacy group was created to help deal with this disease. I have volunteered for APFED for many years and joined the board recently in part to thank this organization for all of the work they do to help families like mine deal with this rare condition.

I hope that every family that is dealing with one of these eosinophil-associated diseases will find APFED and take advantage of all of the resources they have to offer, including the annual conference. Even though my son had already been living with EoE for many years when I attended my first EOS Connection conference, it and APFED changed our lives.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

April 10, 2013

more

April 10, 2013

APFED is an outstanding resource for both patients and physcians!

More feedback...

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

April 10, 2013

more

April 10, 2013

I am a clinical dietitian for an allergist in Charlotte, NC. The APFED website has served as a phenomenal resource for my patients before and after their initial visits. I have been over the moon pleased with the simplicity of the presentation of such a complex disease. I also have to thank APFED for their assistance in promoting community awareness. With their help, I started a local support group.

More feedback...

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

April 9, 2013

more

April 9, 2013

My son was diagnosed with Eosinophilic Esophagitis (and suspected lower EGIDs) when he was 10 months old. I had never even HEARD of Eosinophilic diseases.

So, naturally, the first thing you do when a new diagnosis is thrown at you.... I started googling this strange new disease. Medical
sites had some information, but I still felt like I was in a very grey area between mass confusion and total clarity.

I came across the APFED site and immediately it became my go-to for information. The information on the page was what made me realize that our specialist at the time was not well versed in the disease and that we needed to find better help for my son. It also helped me to find my son's current team.
If I EVER have a question about my son's disease, I head on over to the APFED wesbite. They are full of up to date and accurate information, and I greatly appreciate the effort and time that goes into this site. I don't know where we would be without it.

More feedback...

Will you volunteer or donate to this organization?

Likely

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

A lot

When was your last experience with this nonprofit?

2013

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