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54 Reviews
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October 16, 2014

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October 16, 2014

Excellent organization. They provide patient education, fundraisers for kidney disease research and help connect patients for support.
February 20, 2014

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February 20, 2014

Nephcure is an organization that supports people that have no where else to go with information and help. Having a child with a disease that there is no cure for is a hard thing to swallow for a parent. Nephcure was there for me and my family every step of the way. Nephcure is an organization that saves families and lives.

Ways to make it better...

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

More visibility excellent 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?

2014

February 18, 2014
1 person found this review helpful

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February 18, 2014
1 person found this review helpful

My experience with Nephcure has been largely confusing and frustrating. When, at a recent charity gala, they bestowed an award to notoriously sketchy pharmaceutical company Questcor, a company that manufactures a drug that has little to no efficacy in treating kidney disease (something i found out from a quick google search that was also corroborated by my own nephrologist) and charges exorbitant amounts of money for said drug, I was confused. I wrote to Nephcure on Facebook stating as much, inquiring as to why they would choose to honor this company (a company that is notorious for paying large sums of money to doctors for promotion of their drug, despite very little clinical evidence of its usefulness), and I received no response, which was telling. Not only did they not respond to my message, but they also deleted links to articles about the questionable integrity of Questcor that I had posted in the comments section under their link about the gala. Patients deserve to be informed about these things, and if Nephcure truly had the best interests of kidney disease patients in mind, why would they block access to this information? Why would they promote a company and a drug that has done almost nothing for kidney disease sufferers? Nephcure strikes me as the kind of "non profit" that is in the pocket of big pharma: not as interested in a cure as it is in its own self promotion, which is a shame, because people suffering from FSGS have no other organization to turn to that deals specifically with this disease.

More feedback...

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

None

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

No

How do you feel you were treated by this organization?

Badly

When was your last experience with this nonprofit?

2014

February 18, 2014

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February 18, 2014

I appreciate all they have done, particularly for the children who have FSGS and Nephrotic Syndrome. However, they can't seem to get their volunteer base organized in many places. Things worked fine when I was in San Diego and we actually got a walk off the ground (although my schedule prevented me from helping out). Then I moved to northern Florida and there was no organization in my city/region and the person/people that were supposed to be working on coordinating that part of Florida never contacted me. I have since moved to the Charleston WV area and again no one has contacted me after I requested information for my region. Another problem is the emphasis on the children patients of these diseases, I am a 47 year old male who was diagnosed 9 years ago and will have this disease for the rest of my life, whether I ever need dialysis or not. Most children get it, need a transplant quickly, get it, and for the most part, except for making sure the transplant sticks, they no longer have the disease.

Ways to make it better...

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

Organize the clients/volunteers in areas better.

More feedback...

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

A little

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

Unlikely

How do you feel you were treated by this organization?

Somewhat badly

When was your last experience with this nonprofit?

2011

September 7, 2013

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September 7, 2013

My daughter was diagnosed with Nephrotic Syndrome at 2.5 years old, which progressed to FSGS. Finding Nephcure gave us hope that there were other families dealing with what we were......Nephcure is the only organization that is searching for a cure and helping families dealing with this horrific illness.

Nephcure is the much needed resource for anyone dealing with Nephrotic Syndrome.

More feedback...

When was your last experience with this nonprofit?

2013

September 7, 2013

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September 7, 2013

Nephcure is an excellent organization. The support it gives to its members is excellent. Raises lots of money for research for a cure of FSGS and nephrotic syndrome.

Ways to make it better...

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

None excellent

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 6, 2013

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September 6, 2013

This is an amazing foundation that provides much needed support to families that are battling this difficult disease.

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 5, 2013

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September 5, 2013

4 1/2 years ago we were devastated by a diagnosis of FSGS for our 16 year old daughter. Several months later after joining Nephcure we attended our first Lunch and Learn in Montreal. It was a phenomenal experience. Since then we have supported Nephcure and continue to follow their growth, development and expansion in Canada.

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 5, 2013

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September 5, 2013

Nephcure has been so helpful as well as informative following my son's diagnosis with FSGS last year. I am thankful to all those involved in his foundation who work together in hopes of finding better treatment options.

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 5, 2013

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September 5, 2013

In 2007, my then 4 year old son was diagnosed with Nephroticy Syndrome. Neither we nor any of our friends or family had heard of the disease prior to my son's diagnosis. This left us feeling overwhelmed, scared, and alone. We searched online and were extremely lucky to find the Nephcure Foundation. The Nephcure Foundation has been a great experience for us as an educational tool as well as just receiving general support. While its presence has continued to expand, its executive director and staff remain easily accessible and ready to help people and families suffering from NS on a more personal level. The Nephcure Foundation has been integral in expanding awareness of NS and FSGS and works tirelessly to find a cause and cure. We will be forever grateful to the Nephcure Foundation.

Ways to make it better...

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

The only changes I would make are those already being made by the organization - continuous efforts to expand its base and fund research to find a cause and cure for NS and FSGS.

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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