Huntington's Disease Society Of America, Inc.

Rating: 4.72 stars   107 reviews

Issues: Health

Location: 505 Eighth Avenue Suite 902 New York NY 10018 USA

Mission: The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s Disease. The Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 200,000 at-risk in the United States.
Target demographics: everyone affected by HD and their families.
Geographic areas served: all of the United Stated
2014 Top-Rated Nonprofit
Write a Review

More Info

EIN 13-3349872
800-345-4372
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Role: General Member of the Public
Rating: 5 stars  

HDSA is a truly amazing organization. It provides a sense of clarity and comfort to families affected by HD when things are seemingly spiraling out of control. They provide information and resources we are desperately seeking, and show you that you're not in this alone. They definitely deserve the recognition.

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

HDSA has helped families and patients themselves with the devastating effects of HD. They offer wonderful programs for families to help educate caregivers and also support for the patient. They have also offered great programs for the children of HD families to deal with this hereditary gene.

They have made great progress in regard to stopping the HD Gene but so much more needs to be done to help the thousands of people effected. One day before I leave this earth I hope to read they have found a way to stop HD and that treatment can be giving to all the patients and family members that tested positive for the gene.

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 4 stars  

We have a 36 year old daughter with Huntington's. This non-profit page provides us with comfort and information. There are other HD families out there and this helps us with perspective.

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

The Huntington's Desiese Society of America is a superb organization. I attended parts of the conference in Jacksonville with a family friend. Everyone was welcoming, informative. There was a great talent show and the participants, MC and other volunteers there were passionate and enthusiastic about fighting for their cause and raising money to find a cure. I met kind people at the conference and was invited to attend a support group to get more information and be more aware, as I am a teacher. The people there as well as th group leader were welcoming, kind and generous!

Will you volunteer or donate to this organization?

Unsure

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

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

We need more research to help find a drug that will help people with Huntington's which is such a dipilating disease. Please support the foundation which is full of useful information and keeps us posted with the latest status and updates us on the newest research and information on helping our loved ones with Huntingtons which includes my husband.

Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 1 stars  

I am a 75 year old mother, grandmother and great grand mother and Huntingtons disease came into our lives in 2009. I have been watching and reading these reviews and I am shocked that more and more people are not telling the truth! It only takes you to listen to what their CEO said!! Here is the link and please listen to this radio show like the other reviews said. http://www.blogtalkradio.com/help4hd/2012/03/27/help-4-hd-news-channel-with-louise-vetter

Will you volunteer or donate to this organization?

No

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

None

When was your last experience with this nonprofit?

2009

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

My wife died from HD (Huntington's Disease). This organization has helped families like mine in many ways such as funding research to find a cure, providing support to caregivers, and increasing the public awareness of this relatively unknown but terrible disease.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 4 stars  

All of the people I have dealt with at HDSA have been caring and understanding. I have attended several conventions and they have been very inspiring. Its so nice to gather so many people who are going through the same issues my family are going through. Thank you for all that you do.

Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 1 stars  

2 people found this review helpful

I am a mother of three children who are at risk for this disease HD and lost my husband because he battled it for so long. We live in north Carolina. This is a horible disease!! I am only bringing this up becuase it seems like no one else will or has yet but the HDSA needs to be reviewed about their donations and research that they say they are doing for us in the community. They were just looked at there is a problem with the way they say the money is going to. I did support them and did walks but I will not anymore until the truth comes out. More people are asking questions and want to know what is going on with this company who says that they work for us in the HD community. Please I ask that you look into this.

Will you volunteer or donate to this organization?

No

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

A little

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

It is very important that organizations for Huntington's Disease be recognized and supported, particularly since this is an always fatal "orphan disease" which genetically runs in families, and therefore doesn't have as much money funneled into it as some of the more known diseases. I have lost most of an entire side of my family due to this devastating disease.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful?