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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

20 Stories from Volunteers, Donors & Supporters

Frances17

Donor

Rating: 5

HDSA is a major platform for individuals who are at risk, have HD or have loved One's who suffer from the disease. I am thankful for HDSA and the awareness this organization raises for the disease, as well as the resources it provides for individuals/families affected by the disease.

Donor

Rating: 5

HDSA offers families a place where they can find the most up to date information on HD. Often they are the first place a person with HD calls when they learn that HD is in their family. HDSA advocates for the HD community every day.

Donor

Rating: 5

This is a great non profit fighting for a worthy cause!

1 Krista10

Donor

Rating: 5

The HD Society is a wonderful organization. Not only do they support those affected by HD, they invest in realistic research and contribute to the HD patient as a whole person, not just the disease. They also provide support for families, caregivers, and the community. The fundraising done for HD is done in realistic, local levels to produce national results. Very pleased overall and there are tons of ways to give.

1 Amy_177

Donor

Rating: 5

Best non-profit organization out there. The information they provide is hugely comforting. This disease is not as recognized in the general public, but with HDSA working 24/7 with families and for a cure, we hope to raise more awareness.

1 Amanda152

Donor

Rating: 5

Best non-profit doing great work! Feel great about my money going to HDSA!

1

Donor

Rating: 5

My brother's partner's (J) mom has HD and it has been heart-breaking to watch it progress over the past few years. J and her brother (& her son) have yet to be tested. Initially I had a hard time understanding why, but the more I have learned, and the more I have talked with J about her concerns, I now get it.
It really breaks my heart to think that any one of them has HD, much less two or all 3 :(
J's whole family is active in HD fundraising and research and I am happy to do what little I can!!!

Tiffany12

Donor

Rating: 4

HDSA provides information to people regarding a rare disease with no cure. The public needs this information so they can show their support to this worthwhile cause.

Will14

Donor

Rating: 5

For its tireless efforts to promote the HD cause in Congress, build awareness among the general public, fund cutting-edge research, and support and educate HD families, I recommend the Huntington's Disease Society of America for the Top-Rated Nonprofits List.

Donor

Rating: 1

I would give 0 stars if that were possible. I have been a donor to the HDSA for years thinking that they were fighting to find a cure for Huntington's disease. they have not done what their mission states and in my opinion they are a fraud and should be investigated by the IRS.