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

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
62 Reviews
1234.935485
Previous | 1 2 |
Write A Review
May 29, 2013

more

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

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

July 20, 2012

more

July 20, 2012

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.

The Great!

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

getting my son diagnosed, and a treatment center being established in my region.

Ways to make it better...

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

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

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.

July 18, 2012

more

July 18, 2012

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.

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 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

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 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 24, 2011
1 person found this review helpful

more

June 24, 2011
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.

The Great!

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.

Ways to make it better...

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

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

June 21, 2011

more

June 21, 2011

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.

The Great!

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.

Ways to make it better...

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

help raise more money for research!

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

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

Previous | 1 2 |
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