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19 Reviews
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October 22, 2013
1 person found this review helpful

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October 22, 2013
1 person found this review helpful

I have to say that I am beyond impressed by this organization. I just got back from the FPIES Education Conference they hosted and it was an incredible experience. I was floored by all their doing to help families. The conference answered so many of the questions I had. We just got diagnosed FPIES a few months ago and I was overwhelmed by all the info out there--didn't know where to start. I got to spend an entire day learning about FPIES, asking questions, and meeting other parents. I am SO grateful for the opportunity. The moms who run this organization are amazing, selfless women. The doctors are all so driven and compassionate to help our kids (I wish we had doctors like this where I live -- I wanted to pack one in my suitcase to take home!). If I could give 10 stars to IAFFPE, I would -- they are going to change the world for FPIES kiddos.

Ways to make it better...

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

I'd give them a million dollars if I could to fund all their research and initiatives!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 17, 2013
2 people found this review helpful

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October 17, 2013
2 people found this review helpful

The IAFFPE is really good at getting noticed but I find them slightly dismissive of families that don't fit their preconceived notion of what "FPIES" is. FPIES is a very rare allergy affecting babies who can't speak for themselves. It is tough to get doctor's to help and for a child who suffers chronic versus acute fpies, diagnosis can be a long time coming. I reached out to the IAFFPE for help and they got right back to me, which was awesome. But, when my child didn't exhibit symptoms like their kids did I wasn't given much guidance. It's not that they dismissed my concerns, but rather that it seemed helping my kid didn't further their own agenda. I also feel like they do an awful lot of self congratulating and if you are not part of the CHOP (children's hospital of pennsylvania) community then you're not part of the "in-crowd." too political for my taste which is too bad, because they do a good job of at least gettting people to talk about FPIES.

Ways to make it better...

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

less political, less self-serving and an equal commitment to chronic fpies children.

More feedback...

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

September 10, 2013

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September 10, 2013

As grandparents of 2 boys with FPIES, we have seen how difficult it has been for our daughter and son in law to deal with a condition about which so little is known. IAFFPE has been a significant resouce in providing information, support and hope to our family and many others.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

September 10, 2013

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September 10, 2013

The IAFFPE has been an amazing source of FPIES knowledge and help for our family. Our son was diagnosed with FPIES in July 2013 at the age of 2. It was because of the IAFFPE that we were able to find a doctor who was knowledgeable in diagnosing and treating our son. Their efforts to support not only the patient but also the parents is so wonderful! We would be lost without the ER letter, web videos, and other resourceful information. It is so difficult to explain FPIES to our local doctors, friends, and family at times. The IAFFPE is a safe, reliable, and accurate beacon of hope for us to turn to... Thank you Fallon Schultz and all other members of the IAFFPE for all your hard work and dedication to the FPIES families across the US and worldwide!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

September 10, 2013

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September 10, 2013

I'm grateful to the work IAFFPE has done to raise awareness and champion funding efforts for FPIES research. My FPIES son is 2 yrs old and can only eat 4 foods. It has been a long and challenging two years. I'm grateful to this organization for garnering the support of the top medical professionals who are passionate about research and finding not only a cure, but also working together to create consensus on how to manage this condition. Parents who have children with FPIES are horribly alone in this journey, so knowing that IAFFPE is working to change that by educating doctors and the public, funding desperately needed research and bringing families together is tremendous.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

September 10, 2013

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September 10, 2013

When I was first asked to be a board member for IAFFPE there was not much that I knew about FPIES. I was asked to join by my good friend Fallon because she felt my degree in Public Health would be beneficial to both the board and the organization. For me personally being on this board for the past year has been such a fulfilling and rewarding experience in my life. IAFFPE has taught me so much about FPIES. I have seen first hand what these families truly struggle with on a daily basis. I have seen the joy from the families over getting more exposure about FPIES in magazines and television shows. I have also seen the joy and satisfaction of getting a ICD Code and the significance it has on the families and parents who are working hard to get this disease recognized. This has been an amazing experience for me and I cannot wait to see what IAFFPE does next.

Ways to make it better...

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

Nothing! Everything is working amazingly!

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

A lot

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

September 9, 2013

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September 9, 2013

I knew nothing about FPIES before I found the IAFFPE website one night when I was searching the internet for answers to my daughter's symptoms. If it weren't for IAFFPE, I would not have known what was wrong with my daughter and then to contact Children's Hospital of Philadelphia! Wonderful organization that I am proud to support!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

September 9, 2013

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September 9, 2013

IAFFPE has done amazing work in the field. It represents the true national and international leader in the field. IT has promoted awareness and education. Many providers use this organization as to the go place for information.

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How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

September 8, 2013

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September 8, 2013

When our son was first diagnosed there was not a reliable support group to reach out to, there was not a diagnosis code, or a consensus. I felt lost and very alone in the battle of FPIES, but after IAFFPE started and I was able to dedicate my time and energy to volunteering with the group it has made our family feel like we are doing something for all the kids out there now and in the future with FPIES. I can feel good that newly diagnosed children and families have reliable information and support, as well as the physicians out there looking to help their patients. I will continue to dedicate time and energy even though my son is showing signs of growing out of FPIES. It is amazing to see the strides in the past two years, and to hope for what we can change in the future, I can't wait to spend more time with all that volunteer and work for IAFFPE!

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?

2013

September 8, 2013

more

September 8, 2013

As a mom of an older child with FPIES, IAFFPE has been an amazing support for us! Even though we are over the days of trialing many foods, trying to add new foods to our diet, finding doctors who will listen, and the other things you go through early on...IAFFPE is here for us that have been on the long haul! They have ongoing research and education for all of us! Thank you!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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