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

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
70 Reviews
1234.942865
| 1 2 3 4...7 |
Write A Review
August 15, 2012

more

August 15, 2012

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.

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?

2012

August 15, 2012

more

August 15, 2012

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!!!!

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?

2012

August 12, 2012

more

August 12, 2012

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!

More feedback...

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

August 10, 2012

more

August 10, 2012

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.

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?

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

August 10, 2012

more

August 10, 2012

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 :)

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?

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

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

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

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