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2017 Top-Rated Nonprofit

Huntington's Disease Society of America, Inc.

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Health Care

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

Programs: Research - supplies research as advised by its medical & scientific affairs committee. The research projects are involved in finding cures and treatments for huntington's disease.

patient and family services - provides counseling and referral services to patients with huntington's disease and their families.

chapter development - provides workshops, seminars, and symposiums on huntington's disease through a network of chapter affiliates and branches throughout the united states.

education

Community Stories

141 Stories from Volunteers, Donors & Supporters

Professional with expertise in this field

Rating: 5

I am working with HD families from time to time and I am glad to be able to have the HDSA website to connect them to as a resource.

General Member of the Public

Rating: 4

I am very happy with the support i have received recently. I was able to talk with someone who understood what i was going through. They were able to guide me in the right direction on how to get care for my mom.

Client Served

Rating: 5

My family and i are grateful for attending convention for the first time this year. It has brough us hope.

General Member of the Public

Rating: 5

You have a very resourceful website that has helped us find more information about the disease. We appreciate the local resources available, it has allowed us to connect locally.

Client Served

Rating: 5

We are grateful for the support we have received. Connecting us to our local community has been very helpful. Our closest COE has helped us navigate through all of our questions.

Donor

Rating: 4

Thank you for raising awareness of this disease. People need to have access to as much information as possible and your website is a great resource.

Professional with expertise in this field

Rating: 5

Great resources and continuing education for professionals.

General Member of the Public

Rating: 4

Thank you for adding educational programs for professionals. We have been able to educate our "team" about how to provide better and comprehensive care to our families.

Client Served

Rating: 5

Thank you for offering so many online resources. We have used online support groups and it has been helpful.

Client Served

Rating: 5

Thank you for the hard work that you do. My children now have a network of support that can relate to them.

Donor

Rating: 5

Great outreach and awareness events to educate the public

Volunteer

Rating: 4

HDSA goes above and beyond with advocacy efforts. They are always helping the community have their voice heard.

General Member of the Public

Rating: 5

I attended the convention for the first time this summer and was very pleased with how much information was available to me. thank you so much, keep up the good work!

Client Served

Rating: 4

Thanks to HDSA's help I was able to find help in my area.

General Member of the Public

Rating: 5

I reached out to their help line and was able to get assistance in my area right away.

Client Served

Rating: 4

Thank you for providing so much information. All the literature we have receied has been really helpful.

Client Served

Rating: 5

Thank you for all of the support you offer. I have participated in the new online support groups. It is a very exciting opportunity to be able to connect with other families that are going through this.

Volunteer

Rating: 5

Without the HDSA and the NYA, I would have felt all alone in this fight against Huntington's Disease. These organizations brought me closer to others affected and made me really understand the disease so much better. They provide so much hope for our community and do such great things!

Volunteer

Rating: 5

HDSA and the NYA have done so much for myself and so many that are affected by HD. Being able to be a part of such an amazing community with so many inspirational individuals affected by HD makes me realize I am not alone, it gives me hope, and pushes me even further in my journey to fight. xoxo

1

General Member of the Public

Rating: 5

HDSA is a nonprofit organization that takes a grass roots approach to spreading awareness and raising money to deal with different issues that affect the families who affected by this debilitating disease. From the establishment of unique medical facilities that help individuals to understand and address the unique psychological and physical conditions created by the disease to fighting on Capital Hill to have bills passed to get people affect by HD the proper health care at the right time, HDSA and its members are at the forefront of trying to help provide the "hope" and "help" need in the the HD community. I am proud to be a part of it!