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

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
54 Reviews
1234.79635
Previous | 1 2 3...5 |
Write A Review
October 17, 2014

more

October 17, 2014

Fantastic resource! We found this organization while frantically searching the internet the day our daughter was diagnosed with Nephrotic Syndrome over four years ago. It has been a source of hope for us over the years. The Nephcure Foundation is funding vital research projects that are needed to help find a cause and cure for Nephrotic Syndrome. My parents have friends whose son was also affected by this disease and my daughter is being treated exactly how their son was treated 40 years ago, more research is needed for more treatment options!! Thank you Nephcure Foundation for your fundraising and research efforts, as well as your support of patients and families. We will continue to support Nephcure and we are proud to be associated with this organization. Thank you Nephcure Foundation!
October 16, 2014

more

October 16, 2014

Excellent organization. They provide patient education, fundraisers for kidney disease research and help connect patients for support.
October 16, 2014

more

October 16, 2014

My son Mason was diagnosed when he was one year and three months old. The first year of us knowing he has NS was so hard. Not knowing what will happen to him, not knowing what NS was really. I mourned for my sons good health that was now taken away by NS. After that year I started looking further into NS I found groups on Facebook and those groups told me about NephCure. NephCure has been wonderful full of information and support. I have now became involved with helping with the Dallas and Houston walks. It gives my son the chance to meet other kids that also have NS and FSGS. He is always a happy boy and when he becomes older I would like him to know that he has a support group that he is not alone in this battle. NephCure has done amazing work on spreading the awareness of NS and FSGS. Great JOB NephCure.
February 26, 2014
1 person found this review helpful

more


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

more

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

more

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

more

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

more

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

more


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

more

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

Previous | 1 2 3...5 |
Write A Review

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