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eos.utah

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APFED
June 23, 2014

i became aware of APFED after my daughter was diagnosed with an EGID. I am so grateful for all that APFED does for patients and their families. The annual patient conferences, educational pamphlets, website, legislation and research involvement is extremely valuable. If it were not for APFED I know I would not be the advocate for my daughter the way she needs and deserves to be advocated for. This is due in large part due to the information that I have received from APFED. I am able to communicate to my daughters physicians, teachers, and others in my community about eosinophilic disorders based off of the education I receive and continue to receive from APFED.

Ways to make it better...

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

Offer community outreach grants

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?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

MY ROLE:
Volunteer

APFED
June 20, 2011

When our daughter was diagnosed with an eosinophilic disorder three years ago, we felt we had no where to turn for information. We had never heard of the disorder and knew no one else with it. At a routine doctor appointment the physician mentioned that an annual patient conference given by Apfed would be held in our state in the following few months. We attended the conference and learned more in those few days about the disorder than we had in the 6 months since our daughters diagnosis. Apfed provides education, support and promotes awareness of a disorder that can deeply affect a patients life.
I am grateful for Apfed and the help they offer patients and their families.

The Great!

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

finding the support and education needed to help my daughter get the medical care and emotional help she requires to deal with this disorder.

Ways to make it better...

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

1. Make a file on the website that would allow individuals access to legislative material to help with state or national amino acid insurance coverage. 2. I feel many members are not aware of or know how to become involved in organizations such as NORDA or Senate bills that may affect amino acid coverage. 3. Find a way to let more doctors, doctor offices and hospitals aware of Apfed and its local chapters. Register for United Way in each county and state where there is a support group.

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

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

By starting a local support group I have met other families and patients that live with this disorder every day. I love and cherish each of them and the lessons they teach me and my family. I would not have even thought of starting a support group if it were not for Apfed. Became active in state legislation.

How did this volunteer experience make you feel?

Great! Tired!

When was your last experience with this nonprofit?

2011

MY ROLE:
Volunteer & I started a support group for individuals and families that suffer from eosinophilic disorders.