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51 Reviews
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February 26, 2014
1 person found this review helpful

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1 previous review
September 6, 2013

I got involved with NephCure after learning one if my business partners children suffers from FSGS. After researching and learning more about the disease, it is clear that NephCure is the go-to resour... more

February 26, 2014
1 person found this review helpful

My business partner's son was diagnosed with FSGS and from the first time I heard about it's devastating effects I knew I wanted to help. When he got me involved with the NephCure Foundation I immediately became intrigued by their transparency, responsiveness, and dedication to finding a cure. Their staff is top-notch and they are constantly working around the clock to help find better treatments and fund research to one day find a cure for this debilitating disease. I would highly recommend their organization to anyone suffering from FSGS or Nephrotic Syndrome, or anyone looking for a great non-profit to donate to or volunteer time to!

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?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2014

September 6, 2013

I got involved with NephCure after learning one if my business partners children suffers from FSGS. After researching and learning more about the disease, it is clear that NephCure is the go-to resource for supporting patients and raising funds to find a cure for this disease. The events NephCure puts on are top notch as are its staff. NephCure is constantly working with leading drug companies and research institutions to find a cure that is so badly needed. Their work and efforts are exemplary.

Ways to make it better...

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

Work harder to get more patients registered and increase fundraising.

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

February 21, 2014

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February 21, 2014

I live in Canada and I have been a proud supporter and volunteer for the NephCure Foundation since 2008. My involvement began when my son was diagnosed with Nephrotic Syndrome at the age of 22 months. Since then I have had the pleasure and privilege of meeting some remarkable people.
NephCure helped me get a better understanding of what this disease is all about and help educate others who have never heard of it.
The NephCure Foundation is there for you when you are in need of support!

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?

A lot

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

February 21, 2014

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February 21, 2014

I live in Canada and Nephcure gave me hope after my daughter was diagnosed with FSGS at the age of two. I connected with them at a Dallas run and ever since then they have been super supportive and caring. Every time I speak with one of them they always ask how my daughter is.
Nephcure makes
me feel like I am part of a family. They understand how hard it is.

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?

2014

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 20, 2014

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February 20, 2014

When you, your child and/or a family member hears a diagnosis for FSGS, you realize that this is not a disease that is widely known and/or curable & then you realize how very alone you are. That's a scary place to be with no one to turn to who may have an answer and/or a helping hand.

Well you do have someone in your corner - The Nephcure Foundation. They are there for support, guidance and to make everyone aware of this deadly disease which has not gotten the exposure and support that other diseases have.

It is easier to criticize an organization than to give them props for trying to do the right thing, i.e. to save children that are dying and to provide a service that the victims of this disease can turn to. They have been instrumental in bringing attention to this horrible disease, so support their cause. Their only goal is to save a life.

More feedback...

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

A lot

When was your last experience with this nonprofit?

2013

February 20, 2014

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2 previous reviews - show all
September 6, 2013

I have becomes involved with the nephcure foundation when my boss's son was diagnosed with FSGS...it's very scary when you have no one to turn too!! And that is when we or at least I was introduced to... more

February 20, 2014

When my boss's son was diagnosed with FSGS they had no where to turn to! The Nephcure Foundation became there support and foundation...the Nephcure Foundation has become there army...I am not a good writer but all I am trying to convey is that they help families everyday who are alone with this disease with no known cure, The Necphure foundation helps with fund raising, seminars , and research so that one day hopefully they will be out of business...I have never seen an organization become a family member and a beacon of hope so strongly with family members trying to save there loved ones...we would be lost without the Nehcure foundation

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?

2014

September 6, 2013

I have becomes involved with the nephcure foundation when my boss's son was diagnosed with FSGS...it's very scary when you have no one to turn too!! And that is when we or at least I was introduced to the nephcure foundation . They are to help connecting people from all over the world!! Raising money to help all these children in need . And never giving up on finding a cure ... I would be lost without each and every member who dedicate there lives to help family in there time of need with hope and never ending research so that one day hopefully they will no longer be a need!!! I am not a writer but all I can say is that this foundation performs miracles everyday!!!

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

June 10, 2011

I was introduced to the Nephcure foundation when a close friend of mine son was diagnosed with F.S.G.S a very rare kidney disease…the family did not know who to turn to…
86 cents out of every dollar they raise goes to research and education. They are helping to fund 30 research projects around
the world. They are also helping to fund a database and registry for F.S.G.S (Focal Segmental Glomerusclerosis) and Nephrotic Syndrome patients. Also there board members and volunteers work day and night trying to come up with events and networking ideas to get this disease the attention it deserves….Since it is a rare disease (though becoming an epidemic)…most children go undiagnosed until its too late simple because there symptoms goes unnoticed, also because of HIPA laws…it is very hard for families to find help…

This non for profit is a miracle for anyone whose life is touched with this horrific disease…there passion in finding a cure and helping people now in the present find stability in their lives…is a true miracle…
www.nephcure.org

The Great!

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

In fund raising, and helping to educate community about Chronic kidney dieases

Ways to make it better...

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

Make it bigger

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

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.

More feedback...

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 11, 2013

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September 11, 2013

Four years ago when my daughter was diagnosed with a rare kidney disease, I turned to the internet for help and support and found the NephCure Foundation. Its staff has been instrumental in helping our family cope and they inspire us daily to fight for the treatment and cure of this insidious disease. We feel like a small army has been amassed by the NephCure Foundation and that we are not alone in our personal battle but join with countless others around the country facing the same questions and concerns.

Ways to make it better...

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

Have another office on the West Coast where I live.

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?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

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