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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

134 Stories from Volunteers, Donors & Supporters

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!

1 Mary462

Client Served

Rating: 5

I love that they have outreach for young people affected by the condition. I found several other people that were also taking care of their dying parents all while facing the possibility of their own diagnosis. It helped me not to feel so alone, which is invaluable.

1 Gia_

Client Served

Rating: 5

The HDSA has changed my life in so many ways. I have been introduced to other great HD organizations through them. I have new found family because of the HD community and all that the HDSA has done for us over the years and I have gained SO much knowledge. Without the HDSA, I would never have found all the love and support I needed to get through the hardships of this disease.

1

Client Served

Rating: 5

I don't know where I would be without HDSA, they've educated me and at the same time helped me move forward in my time of need.

1

Volunteer

Rating: 4

Thank you HDSA for introducing me to other youth in the HD community me and allowing me to gain great experience as a volunteer.

1

Volunteer

Rating: 5

The HDSA and the NYA have done tremendous things to connect me with others going through similar struggles and to ultimately make my life better.

1

Volunteer

Rating: 5

HDSA has changed my life for the better. This organization has not only provided me with resources and education, but also a FAMILY. In this organization, family truly is everything. I am ever grateful for HDSA and their support of youth across the U.S. through their National Youth Alliance.

1

Client Served

Rating: 5

At a time in my life, when all seemed hopeless in getting the necessary help for my loved one who is suffering from HD, HDSA was there.
I was at the end of rope, I called HDSA, and started crying on the phone trying to get answers on what to do, where do go from here, and all my questions were not only answered, I was comforted by a wonderful woman. She was reassuring that I wouldn't have to do this alone, HDSA would guide and help me with all our needs.
They were more than just words, HDSA provided me with all the resources I needed.
Without their help, I don't know where my family would be now.
My heartfelt thanks are with all the wonderful people at HDSA. During the hardest time of my life, HDSA helped ease my burden and was there for me.
I am forever grateful to all the wonderful, compassionate, and helpful people that are the HDSA! Thank you for all you do for people with HD and their families!