The Benefits of Sharing Your Experiences With Others
HDSA Support Groups are offered by HDSA Chapters, Affiliates, Regions and Centers of Excellence. Support groups can be led by a professional or by a peer (other HD family member or friend). Every support group leader is provided training by HDSA and assigned a mentor who can serve as a resource and support to the support group leader.
Support groups can offer vital emotional support along the continuum of HD, valuable advice about community-based resources as well as guidance from other support group members about many of HD’s most challenging situations. Support groups can meet monthly or quarterly depending upon the number of participants and wishes of the group. Support groups can be established for everyone in the HD community —caregivers, those living with HD, those living at risk, youth at risk, etc.
If you would like to start a support group, contact Anne Leserman, HDSA’s Assistant Director of Community Services at firstname.lastname@example.org.
HDSA Online Support Groups
These support groups are free to join. There is limited space available so please register early. To register for a group please click join now or log in if you already have an account.
HDSA Online Group Descriptions
- Gene Negative in an HD Family
Testing negative for the HD gene can present its own set of feelings. Join others who want to remain active in the HD community and with their family but carry some unease about their negative gene status.
- HD Positive, Early Symptoms
Early stage participants are independently managing their own lives, but may be experiencing subtle changes such as difficulty concentrating, anxiety and depression, and some physical symptoms. This is a new group for those looking to talk with others in similar life situations about how HD impacts their lives early in the disease. Those attending will be from across the country and membership and leaders will likely change from month to month. Video capability is required.
- Parent Caregiver
This is a new group for any parent caring for a young or adult child with HD. Members and leaders will likely change from month to month due to expanded geography.
- HDSA Caregiver Support Group
This HDSA group is open to caregivers of a loved one with HD who does not have access to an in person group because of distance, time constraints or difficulty with a loved one traveling to group or leaving a loved one alone. The group will meet monthly with a changing leader and changing members due to expanded geography.
- HDSA At Risk/Not Tested
This HDSA group is for adults age 18 and up who are at risk for HD. This group will have monthly meetings with changing leaders and varied members due to their geography. Members will get support from those in similar situations as they cope with their at risk status.