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December 8, 2013

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December 8, 2013

As a coping organization, NephCure tries to fill an empty space. As a resource for patients, they are far below expectations of an organization trying to help and serve patients. Helping to understand the disease state, most doctors at NephCure are stuck in 1970's protocols. Research being funded is of limited use for NS, and largely will result in no improved protocols to treat the condition. Better research is being done globally, not by NephCure and the NIH. Doctors and researchers here are looking for a cash cow to fund their research, which will likely result in no answers in the future. A simple doctor registry is beyond the scope of this foundation. If I were to donate money to this organization, I would seriously consider where my money went. NephCure is not an efficient foundation, and I believe the true desire to operate as a foundation is false.

Ways to make it better...

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

Close it down and start with a new set of leaders that treat the patients with the highest regard. Patients first, researchers second. Doctors and researchers will always put their own interest first. I believe NephCure cannot be changed, as it currently operates.

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

Somewhat badly

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

None

Will you recommend this organization to others?

No

When was your last experience with this nonprofit?

2013

September 6, 2013

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September 6, 2013

I am a nurse who has worked in the field of Nephrology (kidney disease) for 31 years. About 7 years ago I found Nephcure anf I also found HOPE for families living with Nephrotic syndrome and FSGS, These 2 kidney diseases have no cure and many of the current treatments do not work. Nephcure is the most grassroots organization I have ever had the honor to work with and although I currently sit on their board my most important connection is as a nurse sharing Nephcure with my patients and families, I look forward to the day when a cure is found and Nephcure can become part of history, today I am grateful they wont give up!

Ways to make it better...

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

help them continue to grow, they are doing things right.

More feedback...

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

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