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Huntington Disease
Society
Of
India

Huntington Disease Society of India (HDSI) is a non-profit organization working towards the welfare of Huntington Disease affected families and bringing awareness about HD in society. Huntington's disease (HD) is a progressive neuropsychiatric genetic disorder that causes the malfunction or death of neurons (nerve cells) in the brain. As a result, a gradual decline in physical and mental abilities over time generally occurs during their middle-aged years (though the age at onset is variable).

Every child of a parent with HD has a 50% chance of carrying the faulty gene, usually. The math may not work strictly, but it is on an average estimation. It is the same as the chance of getting a head or a tail when you flip a coin. It is not dependent on the gender of the person. In India, awareness is low, and treatment options are largely inaccessible. To address this, we have envisioned HDSI.

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What is Huntington Disease?

Huntingtons disease (HD) is a progressive, genetic neuropsychiatric disorder that causes the dysfunctioning and/or death of neurons …

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Coping with Huntington Disease

HD impacts entire family members one way or the other. Whether it is a person who has inherited the faulty gene that causes Huntington’s disease…

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Huntington Disease in India

We have no formal estimates of the number of people affected by HD in India due to lack of population level studies. Besides the number of people..

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About HDSI

Similar to many HD organisations, we too had a humble beginning with handful of individuals working in isolation who got connected by serendipity, thanks to the social media. HDSI is initiated by the members of HD families with the support of health care professionals involved in HD care which include neurologists, psychiatrists, physiotherapists, psychiatric social workers, Speech and swallowing therapists from NIMHANS. Founding members are from across the country who got connected through various media and worked collectively for about 2 years to form the society.
A preliminary meeting of HD families and health care professionals happened in June 2018 at Bangalore for which 7 members from HD families discussed the idea of forming an organisation with health care professionals. Official approval of the society and the inaugural conference happened in August 2019 at NIMHANS. HDSI is supported by EHDN (European Huntington’s Disease Network), EHA (European Huntington Association), IHA (International Huntington Association) and other international bodies engaged with HD who share a similar vision. HDSI draws inspiration from them. HDSI welcomes all the motivated HD families and professionals to contribute to the cause of HD welfare. Only with unity, commitment and team work, we can make a difference in the lives of those affected by HD. Let us own the cause and work relentlessly.
Our Vision & Mission Huntington’s Disease Society India is a non-profit organization formed with a broader vision of freeing the affected individuals from the sufferings of HD and empower them to lead a better life. Our mission is to address multiple concerns of the HD patients and families with several initiatives all culminating into a better quality of life for the patients with the existing therapies, guide and help the people at risk for HD and promoting research to find new solutions to HD.
HDSI aims to help the HD affected families in all possible fronts through the following:
1. To improve access to health care for all HD patients in India
2. To break the stigma, bring awareness about HD
3. To promote local self-help groups for HD
4. To promote centres for physical, mental and occupational rehabilitation of the patients
5. To establish National registry for HD patients
6. To promote PGT services to prevent vertical transmission
7. To provide special help to the underprivileged people affected by HD
8. To pursue patient advocacy and policy making
9. To promote basic and clinical research in the field of HD

News and Events

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January 30, 2021

HDSI Virtual Conference : Feb 6th & 7th 2021

Click here for registration https://zoom.us/j/93863018979?pwd=UVRrclR6a25hRTZ4MEJheW9menlmdz09

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December 25, 2020

HUNTINGTON DISEASE SUPPORT GROUP INDIA (HDSG, India)

Support groups can offer vital emotional support, valuable advice about community-based resources as well as guidance from other group members about m

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September 18, 2020

HDSI Workshop

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September 18, 2020

Huntington Disease Summit

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September 18, 2020

HD Session At Ahmedabad

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