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 bhoffman565@earthlink.net


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.
or email: info@hdyo.org


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

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 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.