HD Resource List
Huntington's Disease Society of America (HDSA) San Diego County Chapter
Meetings, fundraising, local newsletter.
Contact Stephanie Alband at 619-225-2255 or firstname.lastname@example.org
HDSA National Headquarters:
Newsletter, HD publications information and referral, research updates.
1-800-345-HDSA or http://www.hdsa.org
Huntington’s Disease Lighthouse Families:
A comprehensive organization devoted to provide reliable information and support to HD families.
Huntington’s Disease Youth Organization:
Provides education and support for young people impacted by HD.
http://en.hdyo.org or email: email@example.com
Resources For Persons With HD
Access to Independence:
Provides referrals for transportation, homemakers, housing, employment, benefits counseling and social activities.
619-293-3500 or 760-643-0447 (north county)
Metropolitan Transit Service (MTS) Access:
Door-to-door transportation service for persons with disabilities.
Department of Motor Vehicles (DMV):
To obtain a disabled parking placard.
Call 1-800-777-0133 for the office nearest to you.
Caring Voice Coalition:
A national organization serving people with Huntington’s disease and other specific disorders through financial assistance programs, educational materials, and links to regional community resources.
1-888-267-1440 or http://www.caringvoice.org
Aging and Independent Services:
Provides various forms of assistance to persons with disabilities to help them remain independent at home and in the community.
1-800-510-2020 or http://www.ais-sd.net
To apply for state disability.
To apply for Social Security Disability.
Call 1-800-772-1213 for the office nearest to you.
Southern Caregiver Resource Center:
Provides counseling, information and referral, education and training, limited respite care, and a variety of support programs directed to caregivers of persons with HD.
1-800-827-1008 or 858-268-4432
"Resources and Tools for the Family Caregivers":
A free 2-hour course offered by Sharp Hospital for those caring for a person at home.
Call Sharp Hospital at 1-800-827-4277.
Huntington's Disease Support Group:
For persons with or at risk for Huntington's disease, and families.
4th Monday of each month, 6:00-8:00 p.m. at Scripps Mende Well Being, University Town Center, La Jolla.
Contact Andrew Herndon at (858) 246-1254.
Disabled Person's Support Group:
Monthly support groups for persons with physical, mental, or developmental disabilities.
Contact Access to Independence at 619-293-3500 or 760-643-0447 (north county).
Medical and Mental Healthcare (San Diego Region)
Genetically Handicapped Person's Program:
A California program that provides helps pay for medical costs of eligible persons with Huntington's disease.
Crisis Telephone Line:
24-hour crises line for persons needing emergency mental health assistance including those at risk for suicide.
Psychiatric Emergency Response Team (PERT):
Provides emergency assistance and referral for individuals with a psychiatric crises. Pairs law enforcement with a mental health clinician to do at home crises evaluation.
Call 911 and ask for PERT.
Huntington's Disease Research
Hereditary Disease Foundation:
A foundation with information and updates on HD research.
212-928-2121 or http://www.hdfoundation.org
Huntington Study Group:
An international collaboration of researchers conducting studies into treatments and a cure for HD.
800-487-7671 or http://www.huntington-study-group.org
Cure Huntington’s Disease Initiative (CHDI):
A privately funded not-for-profit biomedical research organizations devoted to accelerating treatment for HD.