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Caregiver, Huntington's Disease
An organization whose primary mission relates to Huntington's Disease caregiver advocacy, education, or direct support programs to address caregiver specific needs. Many organizations provide limited caregiver support alongside programs aimed at patients, but are not caregiver focused organizations.
An organization whose primary activities are Huntington's Disease research addressing physical, behavioral, or social issues. These are not the organizations funding research but those completing research, including pharmaceutical companies. These programs conduct research which focuses on human diseases with the objective of improving human health.
Programs that provide information about Huntington’s Disease including the causes and origins, preventative measures, symptoms, screening and diagnostic procedures or methods of treatment or management including the latest research.
A social connectedness platform that brings together individuals impacted by Huntington’s Disease to discuss disease-related topics. Mutual support groups that schedule virtual “meetings” via the Internet. Included are e-mail listserv groups, bulletin/message boards, newsgroups, and chat groups that are devoted to providing support for participants around the disease.
A professional medical care organization which provides primary care or specialty care to prevent, diagnose, or treat Huntington’s Disease. Routine health care provided by neurologists, neuropsychologists, psychiatrists, internists, family medicine specialists, nurse practitioners, physicians’ assistants or other health care providers who serve as the first point of contact with the health care system. Services focus on the prevention and early detection of health problems through regular physical examinations and other similar procedures as well as therapeutic services.
An organization whose primary mission relates to Huntington’s Disease patient advocacy, education, or direct support programs to address patient specific needs. These organizations may peripherally participate in other activities like legislative advocacy, but patient support is their focus. Programs that help individuals navigate through the maze of the health care system. Personal health care advocates are trained health care workers, often nurses, or volunteers familiar with the health care system who work independently of any health care institution.