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toi

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1 reviews

Review for APFED, Atlanta, GA, USA

Rating: 5 stars  

My 5 year old son has an eosinophilic disorder, is currently off all food, and gets all of his nourishment through a feeding tube. Shortly after his diagnosis, I attended the APFED conference in Cincinnati. I learned a tremendous amount that has helped me care for him and make more informed decisions about his medical care. The community of support that APFED has brought our family and the education we have gained is invaluable. We are looking forward to this year's conference in Denver!

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

-gaining invaluable education through their conferences, website, and newsletters that have helped me to make well informed decisions about my son's medical care. -met others living with EGIDs. -participating in National Eosinophil Awareness Week.

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

-make their website more user friendly: make it possible to link specific pages and make the message boards more user friendly and easily accessible.

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

-the reliability of the information they provide. -unmatched expertise in EGIDs. -conferences and newsletters. -National Eosinophil Awareness Week. -We are thankful for the insurance codes AFPED worked so hard to get.

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

-passionate about their work.

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

-work even harder to find a cure for our kids.

Ways to make it better...

-the website (especially the message boards) were more user friendly.

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

-lack of understanding about EGIDs in the medical community.

When was your last experience with this nonprofit?

2010

Role:  Volunteer & I helped with political action and gift shop.