Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
73 Reviews
1234.945215
| 1 2 3 |
Write A Review
June 24, 2011
1 person found this review helpful

more

June 24, 2011
1 person found this review helpful

My son was diagnosed with eosinophilic esophagitis when he was 3. It was a long road to finally receive his diagnosis and treatment. APFED has become a staple in my life. I received more information on this site than from my son's physicians. My family and I will be attending our 1st APFED conference this summer and we can't wait.

The Great!

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

As research continues, my son will always personally gain from this organization. Without APFED, I'm not sure others would really understand these disorders.

Ways to make it better...

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

None. It has provided me with all the information I have needed.

June 21, 2011

more

June 21, 2011

Apfed has been invaluable in helping us deal with our daughter's chronic disease. Their website alone is a tremendous source of information, covering topics from research, to education, to advocacy.

The Great!

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

Apfed helped us find other families with children with this disease, and specialists that know how to treat it.

Ways to make it better...

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

help raise more money for research!

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

How did you find this group?

internet searching

What, if any, change in your life has this group encouraged?

It helped us find doctors that were knowledgeable in this disease, which greatly increased my daughter's quality of living!

When was your last experience with this nonprofit?

2011

June 17, 2011
1 person found this review helpful

more

June 17, 2011
1 person found this review helpful

APFED is an organization that is vital to the education and support of families dealing with eosinophilic disorders, as well as treating physicians. Education, advocacy and the support of research have, together, increased the availability of appropriate medical treatment and the quality of life for patients.

The Great!

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

Both of my children have eosinophilic esophagitis (EoE) which is a rare medical condition that is virtually unknown to most physicians who meet them for the first time. APFED has helped me to understand the condition which, in turn, allows me to educate medical providers and effectively advocate for their medical care. Networking with patients and physicians at APFED conferences led me to the team of physicians that now provides my children with care that is superior to what they previously received.

Ways to make it better...

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

I cannot think of any changes that I would make to the organization.

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?

2011

June 28, 2010

more

June 28, 2010

My 22 month old son was diagnosed with EE at 16 mos old. There is not a whole lot of information available to parents who are trying to learn about this disease but through APFED, I was able to educate myself and my family on what our little guy was dealing with. This is a great organization that deserves additional funding and recognition. Go APFED!

The Great!

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

I have personally experienced the vast array of knowledge that APFED supplies.

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 26, 2010
1 person found this review helpful

more

June 26, 2010
1 person found this review helpful

Our thirteen year old boy has EE.When our doctor gave us the diagnosis he told us to research it on the internet because there wasn't alot known about the disease.We were left feeling alone and scared.I started researching and found APFED.It saved us.We found the education and support we needed to help our son and they helped us find him the best medical care possible.Without APFED I would have gone into a depression and not have been able to take care of my son like he deserves to be cared for.They provide a conference every year full of support and new research on the disease.We are attending our first conference in Denver in a few weeks and my teen is excited to meet teens with EE for the first time.He will finally have support from other teens and this is all due to APFED.Thank you

The Great!

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

It changed our lives.We would have no support or education for our teen son or ourselves.I cannot believe the level of organization and compassion.It far exceeds our expections.

More feedback...

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

The information I have received has been so helpful.The support and education far exceeded my expectations as well.Thank you APFED!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 25, 2010

more

June 25, 2010

My 3 year old son Jaxon was diagnosed with EE in February 2008. He was taken off all food and put on an amino acid based formula. APFED provided much needed support and information; which was critical for our family especially for the first few months. APFED has also helped us connect with support groups in both Arizona and California. APFED helps families appeal to insurance companies to get formula covered, provides outlines for Individual Education Plans necessary for schools, and organizes yearly conferences to educate and support families affected by Eosinophilic disorders.

The Great!

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

many ways. My son Jaxon had three endoscopies. The last two were clean of eosinophils. Mostly due to the research and treatment funded by APFED. My son has now been clean of eosinophils for over a year, but his condition will be a hurdle his whole life.

Ways to make it better...

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

Update their web site to make it more user friendly and add a section reviewing to top doctors in this field and the programs offered at each of the top hospitals researching these disorders.

More feedback...

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

The yearly conferences. I have attended in Chicago and San Diego. The information provided and the classes given are wonderful and I have used them for reference many times.

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

wonderful. They share their experience and knowledge of this condition and really help provide the support I needed when my son was first diagnosed.

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

Pay for the research necessary to cure this condition. Also help needy families attend APFED conferences and help pay for medical bills.

Ways to make it better...

The website was improved so easier navigation and load time.

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

funding research and educating people. Many people have never even heard of this condition until they or their child is diagnosed.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 25, 2010

more

June 25, 2010

As usual I was undiagnosed for several years. When I was finally diagnosed with eosinophilic gastroenteritis finding information about the disease was very difficult. Apfed not only provides information about the disease it also helped me learn how to live with it. It also supports research for this little known disease. It was truly a life saver organization for me.

The Great!

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

My life and health

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 25, 2010

more

June 25, 2010

My daughter was diagnosed with EC, EG and EE in August of 2009. It's been an overwhelming diagnosis but finding APFED has been a huge blessing. Our doctor at Mayo Clinic actually gave us the website when they gave us the diagnosis. We have found so much helpful information on the website. My daughters favorite shirts are her eos shirts we ordered from the website.

The Great!

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

seeing the wealth of information and the support provided on this website.

More feedback...

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

Find a cure for my daughter and all the others affected by EGID.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 25, 2010

more

June 25, 2010

My 9-year old daughter was diagnosed just 3 months ago with Eosinophilc Gastroenterits. What a frightening thing for a mother to hear. What is it? What does this mean? What do we do? I found APFED through some information our allergist provided to me. What a relief to know we weren't alone. I had never heard of this before, knew no one with the condition, had no idea how to help my daughter. While it currently looks like her allergies are no where near as severe or pervasive as others with this disease, we are in the infancy stages of dealing with it, identifying allergies, and learning what kind of modifications we need to make. I am so excited to be attending the annual conference in a few weeks so that I have an opportunity to learn more, hear about the latest research, learn tips on coping with this disease and hear what the future might hold for us.

The Great!

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

Support, ideas on how to cope. Being relatively new, I am only just starting to see all the benefits from this organization.

More feedback...

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

All the information they provide

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

Fund the research needed to eliminate this disease!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 22, 2010

more

June 22, 2010

My son is 6 and has EE & EC, unfortunately when he was diagnosed @ 4 yrs the Dr did not offer much info and we had NO idea the extent of how this would change our lives. We were told to avoid a few foods and that was it. When he continued to have frequent illness and did not grow, I began to research on my own and discovered APFED. They directed me to a local group, and I cannot tell you the relief I felt to speak to people with the same experiences! Trying to explain to friends and family is impossible, and the APFED videos were a big help when family members informed me that I was making bad decisions in regards to my son's health. They've since kept their opinions to themselves, and we have surrounded ourselves with other families that are sharing in the same struggles. I can't WAIT to attend the conference, to meet moms I feel are friends, and to learn the latest research and treatment has to offer, so that I may offer my son a better future with food IN it!

The Great!

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

The amount of parents available to me to share information with, including doctors that are considered the most knowledgable about eos.

Ways to make it better...

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

??? Haven't experienced any negatives.

More feedback...

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

The willingness of people to help you look for answers in a complicated, difficult situation.

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

very pleasant and helpful over the phone.

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

provide research so that my child could eat food without it making him ill.

Ways to make it better...

??

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

The fact that Eos disorders are still considered rare, when in fact they are becoming more prevalent every day.

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

Children deserve to be able to eat food and experience a normal childhood.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers

3 hours of volunteer time for this nonprofit will...

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