The British Columbia Huntington's Disease Resource Centre (HDRC) assists families and professionals with the many different needs and concerns encountered while dealing with Huntington's Disease (HD). This service is funded through the Huntington Society of Canada and funds from the efforts of the
BC Chapter.
Overview of Services
A flexible program of support services is provided:
Information. We provide information and consulting to families, including information about the nature and course of HD, techniques of care, and research progress. Literature and video tapes are available.
Counselling. We offer short term counselling to individuals and families and follow up on other required care.
Mutual support. We offer support groups in areas of the province where there is identifiable need and Huntington Society of Canada (HSC) staff are available to facilitate the group. Support groups help to lessen isolation, provide mutual support, and share experiences coping with HD for the person with HD and family caregivers. Following is further information on the a twice-monthly support groups in Metro Vancouver. There are several support groups offered in other parts of the province. For further information please contact Susan Tolley, Director of the BC Huntington Disease Resource Centre (contact information below).
Referral. We provide information to families about community services and care facilities and how to access them.
Professional Education and Consultation. We provide information and consultation to community agency staff and healthcare professionals regarding HD, care strategies and recent research developments. Literature, video tapes and education seminars are available to professionals.
Social and recreational. We help people with HD continue their involvement in the community by connecting them to community resources. Example, Community Recreation Centres, Community Health Centre day activity programs.
return to topMetro Vancouver HD Support Group
Goals
An opportunity for people with HD to get together and support one another in a caring and safe environment.
A social-educational-psycho therapeutic group led by an HSC Individual and Family Service Social Worker. The Group assists people with HD to explore strategies for coping, acceptance of the disease process, grieve losses, and offers support to one another.
Who can attend
People with HD at any stage as long as the following criteria are met:
Ability to focus on the topic for the duration of the group session. ( 3 x 40 minute concentration blocks)
Ability to comment on the topic.
Ability to easily be redirected back to group focus. Preservation or interrupting cannot be an ongoing problem throughout the group as it disrupts the group process—this can be evaluated by an HSC Individual and /or Family Service Social Worker.
If an individual with Huntington Disease is not completely independent in regards to physical needs (eating, toileting or mobility) they must have an attendant join them in the group. The attendant will be required to participate in the group activities and assist clients with their physical requirements.
How to enrol
Self referral, professional referral, family referral
If interested contact Susan Tolley, Director of the BC Huntington Disease Resource Centre.
Susan Tolley
Huntington Disease Resource Centre at UBC Hospital
S179 - 2211 Westbrook Mall
Vancouver, British Columbia
V6T 2B5 Canada
Tel: +1 (604) 822-7195
Fax: +1 (604) 822-7970
