The Promoting Excellence Huntington's Disease Peer Workgroup recommends
that HDSA and other community HD resources:
- Inform affected patients' families
- and the public - about HD;
- Develop tools to assess the functional capacity
of people with HD. Three relevant sub-domains of functional capacity are
social, professional and driving
(best assessed by a trained driving instructor).
- Develop educational resources
about the nature of psychological, spiritual and social suffering of people
with HD and their families, as well as the
nature of loss and concomitant grief for families dealing with HD as motor and
- Expand educational resources regarding the impact of presymptomatic
genetic testing on family members.
- Study informational and educational needs
of patients and their families, and expand and enhance patient and family
resources on the HDSA Web site as
- Connect the person with HD and their family with local resources including
HDSA support groups, chapters, Centers of Excellence and community HD
clinics. These vital connections preserve the autonomy of people with HD
all involved in meeting the challenge of care.
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.