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Huntington's Disease Resources

General Information

Huntington's Disease Society of America (HDSA) San Diego County Chapter
Meetings, fundraising, local newsletter.
Beth Hoffman

HDSA National Headquarters
Newsletter, HD publications information and referral, research updates.

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.

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.
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.

Aging and Independent Services:
Provides various forms of assistance to persons with disabilities to help them remain independent at home and in the community.

State Disability
To apply for state disability.

Social Security
To apply for Social Security Disability.
Call 1-800-772-1213 for the office nearest to you.

Caregiver Support

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.

Support Groups

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.
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.

Huntington Study Group
An international collaboration of researchers conducting studies into treatments and a cure for HD.

Cure Huntington's Disease Initiative (CHDI)
A privately funded not-for-profit biomedical research organizations devoted to accelerating treatment for HD.