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APFED
June 29, 2010

Two of our grandsons at the ages of 2 and a half years have been diagnosed with Eosinophilic Eosophagitis. After the initial shock and denial, we have decided to learn more about this life-altering disease and enhance our awareness. APFED has helped us immensely through their well-organized Educational Conferences and their updated Newsletters. During the conferences, we were able to meet and talk with Professionals from all over the United States who are working towards finding appropriate treatments for these rare diseases, learn about nutritional plans and understand the social and emotional inpact of these diseases on the lives of children affected by EE and EGID diseases. APFED has also helped several families find support systems and connect them to appropriate services. APFED has been working diligently to obtain funding for Research and finding treatments for these life-altering diseases.

The Great!

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

Educating patients and their families, establishing support systems, engaging professionals, raising funds for Research and cure of EGID diseases.

Ways to make it better...

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

Organize Webinars to disseminate updated information.

More feedback

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

Patient Education Conferences, News Letters.

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

Very knowledgeable, dedicated and hard-working.

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

Fund Research and help finding a cure for EE and EGID diseases.

Ways to make it better...

APFED organized Webinars periodically to update information.

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

Indadequate recognition and awareness of the EGID diseases, and lack of funding for Research to find a cure.

One thing I'd also say is that...

Twitter Party was not very helpful.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

MY ROLE:
Donor & My husband and I atttended APFED Conferences to educate ourselves about EGID disorders, gained knowledge of these chronic diseases, understood the committment and hard work put in by volunteers, clients as well as professionals. We became members of A.