Helpful Huntington's Disease RESOURCES
For your primary care provider there is an excellent Physicians Guide you can direct them to for caring for patients with HD:
http://hdsa.org/wp-content/uploads/2015/03/PhysiciansGuide_3rd-Edition.pdf
A guide for caregivers:
http://hdsa.org/…/…/05/HDSA_CaregiverGuideFamilies_Final.pdf
A guide for later stages of HD for facilities:
http://hdsa.org/wp-content/uploads/2016/05/
HDSA_CaregiverGuideFamilies_Final.pdf
Many other useful publications:
http://hdsa.org/shop/publications
The Huntington Disease Society of America
(http://www.hdsa.org/) is a National, voluntary health organization dedicated to improving the lives of people with Huntington's disease and their families.
The Huntington Study Group
(http://www.huntington-study-group.org/) is a non-profit group of physicians and other health care providers from medical centers in the United States, Canada, Europe, Australia, New Zealand and South America, experienced in the care of Huntington patients and dedicated to clinical research of Huntington disease. The HSG was formed in 1993, prompted by the recognition that clinical research in Huntington disease (HD) required the participation of large numbers of research patients (subjects) under the cooperative care of skilled and experienced research physicians.
HDBuzz
(http://en.hdbuzz.net/) is the first internet portal for the rapid dissemination of high-quality Huntington's disease (HD) research news to the global community, written in plain language, by HD clinicians and scientists. It covers laboratory and clinical research, with the aim of helping HD people to understand the latest HD science, on their own terms.
The Huntington’s Disease Youth Organization
(http://en.hdyo.org/) is an international non-profit voluntary organization set up to specifically provide support for young people around the world impacted by Huntington’s disease.
Help 4 HD International
https://help4hd.org
Help 4 HD's mission is to educate the world about Huntington's disease and Juvenile Huntington's disease through its multimedia communications platform and through community outreach efforts. The aim is to serve resource centers to provide information, education, resources, and care.
Help4HD is focused on helping HD families by bridging communications and partnering with institutions, industry, and professionals from every discipline. Help4HD's philosophy is always, "Family First". Nothing is more important than facilitating safe and healthy families and the way we do that is through education, outreach and support.
Caring Voice Coalition
(http://www.caringvoice.org/supported-diseases/huntingtons/)
Caring Voice Coalition possesses a unique and holistic approach to improving the lives of patients with chronic illnesses.
From comprehensive outreach programs to services aimed at financial, emotional and educational support, Caring Voice Coalition has empowered and supported patients and their families, as well as the friends who care for them. In addition to financial assistance, Caring Voice Coalition provides insurance education and counseling, and patient support programs for insured or under insured patients.
Enroll-HD
is a worldwide research project that aims to involve as many as 20,000 people who either have HD or are at risk of HD. It is an observational study, meaning that its purpose is to closely track how the disease emerges and changes over time, rather than to test a specific treatment. The study measures mental abilities such as attention and memory, mood and quality of life. It also collects a blood sample so that researchers can analyze DNA and other
biological measures. What we learn now will help improve HD care in the near term, by identifying the most effective ways to treat the disease. It will help HD researchers develop new and better treatments for future generations. Also, being involved in medical research can be gratifying, because it is a chance to take action. Many volunteers feel empowered by taking part in research, a feeling that in doing something to fight back they regain some control over the disease.
You’ll also meet with different health professionals at your Enroll-HD annual visit and find out more about your disease, and perhaps also about upcoming research studies and trials that are testing new therapies for HD. Any member of a family affected by HD can take part, including:
•People who know they have the HD gene, whether or not they have symptoms or have officially been diagnosed with HD
•People who know they are at risk, but haven’t taken the genetic test to find out whether or not they carry the gene
•People with a family history of HD but know they do not carry the expanded gene
•Spouses/partners (not blood relations) of people with HD
•Children under the age of 18 with a diagnosis of juvenile HD may be included in this study with the consent of a parent or legal guardian.
For more information: https://www.enroll-hd.org/participate
For your primary care provider there is an excellent Physicians Guide you can direct them to for caring for patients with HD:
http://hdsa.org/wp-content/uploads/2015/03/PhysiciansGuide_3rd-Edition.pdf
A guide for caregivers:
http://hdsa.org/…/…/05/HDSA_CaregiverGuideFamilies_Final.pdf
A guide for later stages of HD for facilities:
http://hdsa.org/wp-content/uploads/2016/05/
HDSA_CaregiverGuideFamilies_Final.pdf
Many other useful publications:
http://hdsa.org/shop/publications
The Huntington Disease Society of America
(http://www.hdsa.org/) is a National, voluntary health organization dedicated to improving the lives of people with Huntington's disease and their families.
The Huntington Study Group
(http://www.huntington-study-group.org/) is a non-profit group of physicians and other health care providers from medical centers in the United States, Canada, Europe, Australia, New Zealand and South America, experienced in the care of Huntington patients and dedicated to clinical research of Huntington disease. The HSG was formed in 1993, prompted by the recognition that clinical research in Huntington disease (HD) required the participation of large numbers of research patients (subjects) under the cooperative care of skilled and experienced research physicians.
HDBuzz
(http://en.hdbuzz.net/) is the first internet portal for the rapid dissemination of high-quality Huntington's disease (HD) research news to the global community, written in plain language, by HD clinicians and scientists. It covers laboratory and clinical research, with the aim of helping HD people to understand the latest HD science, on their own terms.
The Huntington’s Disease Youth Organization
(http://en.hdyo.org/) is an international non-profit voluntary organization set up to specifically provide support for young people around the world impacted by Huntington’s disease.
Help 4 HD International
https://help4hd.org
Help 4 HD's mission is to educate the world about Huntington's disease and Juvenile Huntington's disease through its multimedia communications platform and through community outreach efforts. The aim is to serve resource centers to provide information, education, resources, and care.
Help4HD is focused on helping HD families by bridging communications and partnering with institutions, industry, and professionals from every discipline. Help4HD's philosophy is always, "Family First". Nothing is more important than facilitating safe and healthy families and the way we do that is through education, outreach and support.
Caring Voice Coalition
(http://www.caringvoice.org/supported-diseases/huntingtons/)
Caring Voice Coalition possesses a unique and holistic approach to improving the lives of patients with chronic illnesses.
From comprehensive outreach programs to services aimed at financial, emotional and educational support, Caring Voice Coalition has empowered and supported patients and their families, as well as the friends who care for them. In addition to financial assistance, Caring Voice Coalition provides insurance education and counseling, and patient support programs for insured or under insured patients.
Enroll-HD
is a worldwide research project that aims to involve as many as 20,000 people who either have HD or are at risk of HD. It is an observational study, meaning that its purpose is to closely track how the disease emerges and changes over time, rather than to test a specific treatment. The study measures mental abilities such as attention and memory, mood and quality of life. It also collects a blood sample so that researchers can analyze DNA and other
biological measures. What we learn now will help improve HD care in the near term, by identifying the most effective ways to treat the disease. It will help HD researchers develop new and better treatments for future generations. Also, being involved in medical research can be gratifying, because it is a chance to take action. Many volunteers feel empowered by taking part in research, a feeling that in doing something to fight back they regain some control over the disease.
You’ll also meet with different health professionals at your Enroll-HD annual visit and find out more about your disease, and perhaps also about upcoming research studies and trials that are testing new therapies for HD. Any member of a family affected by HD can take part, including:
•People who know they have the HD gene, whether or not they have symptoms or have officially been diagnosed with HD
•People who know they are at risk, but haven’t taken the genetic test to find out whether or not they carry the gene
•People with a family history of HD but know they do not carry the expanded gene
•Spouses/partners (not blood relations) of people with HD
•Children under the age of 18 with a diagnosis of juvenile HD may be included in this study with the consent of a parent or legal guardian.
For more information: https://www.enroll-hd.org/participate
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