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The voice of Scotland’s vibrant voluntary sector

Published by Scottish Council for Voluntary Organisations

TFN is published by the Scottish Council for Voluntary Organisations, Mansfield Traquair Centre, 15 Mansfield Place, Edinburgh, EH3 6BB. The Scottish Council for Voluntary Organisations (SCVO) is a Scottish Charitable Incorporated Organisation. Registration number SC003558.

New forum for Huntington’s carers

This news post is over 6 years old
 

Expert advice will be provided for families of those struck by the disease

A new support platform has been launched for Huntington’s disease carers.

The advice forum, specifically designed for carers living in families with the condition, has been setup by the Scottish Huntington’s Association (SHA).

The online forum provides out-of-hours help and advice for anyone who needs support with any aspect of the degenerative neurological condition.

SHA chief executive, John Eden, said: “The needs of people living with Huntington’s disease are wide and varied; no two cases are the same.

“So, for carers who are looking for some support to help manage their own situation having the ability to call on a wide variety of people dealing with similar experiences 24 hours a day is a massive help.”

The forum provides accurate information about all aspects of caring for someone living with HD. It is facilitated by an HD specialist from the charity and carers have the ability to network and share private messages to support each other in confidence.

It is estimated there are around 1,100 people living with HD in Scotland and up to 6,000 are potentially at risk.

“I would urge anyone with a direct interest in HD to register and get involved with the forum, the more people active on it the more valuable a resource it will be,” Eden added.

HD carers can access the new forum by emailing [email protected]