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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

150 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

I was able to attend an HDSA National Youth Alliance retreat recently. I was able to share with a group of people that could relate to what I was going through. I am grateful that these retreats exists.

Client Served

Rating: 5

I attended the HDSA convention for the first time ever this summer and I have found a family that gets me. It is great to share with a community that understands exactly what I am going through.

Client Served

Rating: 5

Thank you for everything that you do. We have received so much guidance. My family and I really appreciate it.

Volunteer

Rating: 5

This nonprofit is absolutely amazing. I've seen the work they do with patient outreach, scientific research as well as fundraising. Their job in uniting all different kinds of people involved is truly inspiring. The people behind it all are so motivated, friendly and willing to reach out. It's an honor to volunteer for them.

Joe E.2

Board Member

Rating: 5

HDSA has been a critical resource for my family. We've benefited from their services that I started volunteering and now sit on the board of the Albany Chapter. I'm proud to work with the local team on fundraising, advocacy, and awareness building.

Volunteer

Rating: 4

The organization does great work, very happy that i can volunteer my time.

Tarole Hager R.

Board Member

Rating: 5

I have worked with many nonprofits over the years. For the past 3 years I have been diligently working with HDSA. I have been impressed with how professional this organization is run. The heart of HDSA is our members and volunteers and this may be the Biggest Heart I have ever worked with.

Donor

Rating: 5

This is my favorite charity. They play a critical role in raising awareness and hopefully a cure for Huntington’s.

Brittany J.1

Volunteer

Rating: 5

My mom was diagnosed with Huntington's Disease a little over a year ago. This organization has helped me reach out to many people and make this rare disease more well known!

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