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

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
3 Reviews
12345
Previous | Next
Write A Review
June 25, 2011

more

June 25, 2011

I found this organization short after adopting my daughter, looking for support and similar experiences.
It has been a blessing over the years, when we went through different stages of my daughter's disease.
It has been my major information resource, a shoulder to cry on, a place where I
feel understood.

The Great!

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

Whenever something changed in my daughter's health, I have always got answers from PKIDs, was able to share my worries and doubts, increased my acknowledgment and was ready to meet doctors and ask questions or understand their words.

Ways to make it better...

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

I only wish there were a similar organization in my country or PKIDs had time/staff to collect information about other countries, too.

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

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

This group provided the tools which have helped to take very important choices and decisions.

When was your last experience with this nonprofit?

2011

June 23, 2011

more

June 23, 2011

Along with many other parents, I helped start this nonprofit because my daughter was affected by disease. I've found that working with this organization allows us to get the latest treatment information from those running the studies in the U.S. and elsewhere. We can't wave a magic wand to cure our kids, but we can stay up-to-date with the latest science to ensure they're getting the best care there is. PKIDs helps us to do this.

The Great!

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

that it's the only place where I can connect with other parents who are experiencing the same challenges we face. It makes a huge difference to me to be able to talk with others.

Ways to make it better...

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

add more staff to increase productivity.

June 23, 2011

more

June 23, 2011

When my daughter was diagnosed with an infectious disease in the weeks after joining our family through adoption in 2002, I was full of fear for her and for our family. My local pediatrician had little experience with the virus and I didn't know where to turn except the Internet. Luckily, I soon discovered PKIDS.

The information gleaned from the PKIDS site gave me nearly instant peace of mind as I was reassured that my daughter's diagnosis was not a death sentence and that, with a few simple precautions, other family members would be absolutely safe. Reading others' stories, ranging from issues around disclosure to how to deal with blood spills, were incredibly instructive and greatly impact the way our family functions act to this day.

The Great!

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

In the eight years since our daughter (who has an infectious disease) joined the family, I have turned to PKIDS again and again for information. Through the site, I have found excellent specialists in our region, had specific questions answered by international experts, and been able to fully prepare for our annual medical visit with just the right questions. I can go on and on. PKIDS is my "go to" site for nearly every aspect of coping with my daughter's condition.

Ways to make it better...

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

My wish for PKIDS would be that it was better known, as a primary resourse for parents, among pediatricians and family doctors throughout the country. If they knew about this fantastic resource they would be able to give the web address to every family when they deliver bad news re: infectious disease diagnosis. As such, they would empower parents to better cope with their child's condition.

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 search

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

So many changes...hard to know where to start. After reading PKIDS info I: * changed the way I was handling disclosure of my daughter's condition (to schools, daycare, camps, etc.) * put together blood spill kits on every floor of my home * found a specialist in a big city four hours away instead of relying on my local pediatrician who had little experience with this disease * taught my daughter how to handle her own blood spills whenever possible

When was your last experience with this nonprofit?

2011

Previous | Next
Write A Review

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