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.
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MY ROLE:Client Served