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73 Reviews
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August 21, 2014

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August 21, 2014

I am Grandma and a volunteer...not enough wonderful words to say about how fantastic they are!

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Would you volunteer for this group again?

Definitely

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?

2014

August 21, 2014

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August 21, 2014

I have been volunteering for APFED for years. The professionalism and organization of the staff and other volunteers has always impressed me. But what is most impressive is their passion and dedication to this wonderful cause!

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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?

2014

June 23, 2014

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1 previous review
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 ro... more

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

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

June 5, 2014

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1 previous review
June 23, 2010

APFED is an amazing organization that advocates for patients and families. When our son was an infant he was very sick. He was borderline malnourished and we couldn't figure out the cause of him being... more

June 5, 2014

I am a mom of a child with EoE. APFED has blessed our family with the wealth of information it provides to families that travel this path. The resources that it offers families is priceless. It provides detailed information to help guide families with coping skills, to preparing your child for school, to celebrations and even recipes for restrictive diets. APFED holds annual conferences to educate, create awareness and to make a difference in the lives of so many people. APFED changed our life through one of its conferences. We were a family struggling with a new diagnosis and found much needed support to help guide our family. It's been 10 years since our first conference as a family and APFED continues to amaze us!

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?

2014

June 23, 2010

APFED is an amazing organization that advocates for patients and families. When our son was an infant he was very sick. He was borderline malnourished and we couldn't figure out the cause of him being so sick. After numerous tests, scans and steroids our son had no change in his condition. At the age of 2 he was misdianosed with acid reflux. Our son was diagnosed correctly with EE at the age of 3 and then was removed from all foods at age 4. This was a drastic change in his life and ours. How do you tell a 4 year old that there is no more food in his world? Our family was gieven this information and then given the name of APFED as an organization that may be of help to us. The first day back from Cincinnati Children's Hospital I called the number to APFED and spoke to the president. She was encouraging and helpful and put me in contact with other families who were struggling down this same path. Through numerous conversations and encouraging words our family was guided down the path of adapting to a foodless world. When I expressed a willingness to coordinate a grand rounds, I was provided with everything that I needed to follow through with that objective by APFED. We were impressed by the dedication of APFED to families, to education, to initiatives and to research that we decided to hold a fundraiser for APFED. We had never taken on such a task before but we were driven on behalf of our son and on behalf of an organization that was instrumental in saving our family unity. We decided to hold a golf tournament and donate all of the proceeds to APFED. Wow! What an inspiring thing we did together as a family. Working together on this project helped to mend our broken and hurting hearts knowing that we were contributing and giving back to an organization that helped us more than words can say. We are now in our 6th year of holding a fundraiser and have raised over $80,000 for APFED. We are paying it forward and will continue to do so. APFED has made huge strides on behalf of patients and families and the least we could do is give back. APFED will always have a special place in our hearts for giving us the HOPE to keep on. Thank you APFED!!

The Great!

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

I have personally experienced the results of this organization's commitment to patients and families.

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

that APFED puts patients and families first. This has been shown by their persistance to establishing universal codes that are recognized by the medical community in diagnosing patients.

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

extremely helpful and generous with their time. Whatever questions I had were quickly answered and when help was needed with certain situations, encouragement was offered.

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

make a huge step in wiping out a disease that painfully affects so many.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

April 29, 2014

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April 29, 2014

APFED is an information-rich resource for families who are wrestling with an EGID. They work tirelessly to provide cutting-edge information, as well as to organize the disease community around educational and fund-raising opportunities. Their conferences are a tremendous opportunity to exchange ideas and meet new people who are living with the disorders. APFED's leaders also do a tremendous amount of advocacy to help ensure that patients get the medical care that they need. We are so grateful to have found APFED and to have opportunities to volunteer for this excellent nonprofit.

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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?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

April 22, 2014

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April 22, 2014

When Emily was first diagnosed at 10 months old, doctors recommended taking her off all food and beginning drinking elemental formula exclusively. We didn’t really know how to cope and daily functioning was difficult for not only us as parents, but understanding how to support our daughter. When we were connected with APFED we finally were able to understand and be educated on what was happening and allowed us to take each step with knowledge about what was happening.

A month after learning about APFED, a staff member connected us to a local support group and finally we felt hope again. I felt like I could breath again and cope with our new adjusted life. APFED has an amazing group of professionals and volunteers that are dedicated and personally want to support and better the community through education.

Ways to make it better...

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

I would make the website more user friendly to help families feel like they can get involved with fundraising. One example might be, I would make it where individuals can have a team page that tracks their fundraising efforts. This makes it easier for the volunteers know how to get started and donors like to see progress and that their donations are a part of a greater good.

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?

2014

May 30, 2013
1 person found this review helpful

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May 30, 2013
1 person found this review helpful

A friend referred me to APFED's website after my daughter was diagnosed with Eosinophilic Esophagitis three years ago. I was completely overwhelmed at the time of her diagnosis. APFED quickly became an organization I hold dear to my heart. Their dedication to supporting families and creating awareness truly goes above and beyond.

Their volunteers inspired me to want to help. With their guidance, I started a support group for local families dealing with eosinophilic disorders. In addition, they assisted me with hosting a walk to benefit APFED's Hope on the Horizon Research Fund. The help I received to make the walk a success was truly amazing. It felt great to give back to an organization that gives so much to others.

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?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

May 29, 2013

more

May 29, 2013

When my grandson was diagnosed with an Eosinophilic Disorder in December 2012 an internet search led us to APFED.org. American Partnership for Eosinophilic Disorders has since been been a tremendous help to my daughter. The information listed on their website helped us understand more about this rare condition. It helped her communicate questions, concerns, suggestions to her son's various physicians. It also gave my daughter a place to connect with other families dealing with this disorder. That alone is extremely valuable. Both my daughter and myself found a "purpose" in volunteering to help American Partnership for Eosinophilic Disorders. My daughter lives in a rural area and has enjoyed doing editing work for APFED. I just completed a thirty day endurance event to create awareness of Eosinophilic Disorders. In appreciation for our efforts APFED help defray travel expenses so that my daughter and grandson could be a part of APFED's Day on Capitol Hill during National Eosinophilic Awareness Week. My daughter and grandson were able to speak with several members of Congress to bring awareness of this disorder and to lobby for research funding.

Ways to make it better...

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

Hope they can obtain fundraising permits in Washington, D.C.

More feedback...

Would you volunteer for this group again?

Likely

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?

2013

May 29, 2013

more

May 29, 2013

My 9 year old son was diagnosed with an eosinophil associated disease in December 2012. The only advice his GI gave us was to visit apfed.org. Their website led me to online community of other parents of children with eos diseases and I quickly made many "friends" who could relate to what we are going through and offer real-life experiences and advice. Apfed's website also offered a wealth of literature on various topics involving eosinophil associated diseases. I began volunteering for Apfed (a few hours a week from home) a couple of months ago and this has led to even more amazing connections around the country. My son & I were recently invited to participate in Apfed's lobbying day on Capitol Hill! The initial diagnosis is heartbreaking and stressful and Apfed literally saved me. The people I have met through this organization have truly saved my son's quality of life. I honestly don't know where I'd be without their knowledge and support.

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?

2013

April 8, 2013

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April 8, 2013

The people at APFED work tirelessly to bring much needed attention to a rare disease. They provide support for those who are affected by this disease, EGID. Many families have been helped by the volunteers at APFED.

More feedback...

Would you volunteer for this group again?

Likely

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?

Likely

When was your last experience with this nonprofit?

2013

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Assist with research of grant opportunities; proof quarterly newsletters; assist with conference planning; assist with fundraising; and many more opportunities. Volunteer