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HD Resource List

General Information


Huntington's Disease Society of America (HDSA) San Diego County Chapter:

Meetings, fundraising, local newsletter.
Contact Beth Hoffman at 805-558-2664 or

HDSA National Headquarters:

Newsletter, HD publications information and referral, research updates.
1-800-345-HDSA or

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. or email:

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

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

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. 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

Huntington Study Group:

An international collaboration of researchers conducting studies into treatments and a cure for HD.
800-487-7671 or

Cure Huntington’s Disease Initiative (CHDI):

A privately funded not-for-profit biomedical research organizations devoted to accelerating treatment for HD.