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Huntington Disease Information

Huntington’s Disease Society of America (HDSA) This website provides information and links to all issues related to HD from understanding HD, living with HD, genetics, family care and research.  

HD Lighthouse Provides information about HD, treatment and care, diagnosis, research and HD community. 

Huntington Study Group provides information about research and HD basics  

Huntington’s Outreach Project for Education at Stanford (HOPES) this is a student-run project at Stanford University dedicated to making scientific information about HD more readily accessible to patients and the public  

Help 4HD International is focused on helping HD families y bridging communications and partnering with institutions, industry and professionals. Their philosophy is always Family First. Nothing is more important than facilitating safe and healthy families and the way do that is through education, outreach and support.  

Genetics

Council for Responsible Genetics is a non-profit, non-governmental organization that fosters public debate about the social, ethical and environmental implications of genetic technologies.  

HD Free with PGD provides information regarding preimplantation genetic diagnosis (PGD) and in- vitro fertilization (IVF). 

National Human Genome Research Institute is focused on advances in genomics research.

Managing Behavior

International Foundation for the Education and Research of Depression provides information about the causes of depression, support for those dealing with depression, and to combat the stigma associated with depression.

Mental Health America is dedicated to promoting mental wellness through advocacy, education, research and services.

National Alliance on Mental Illness provides easy to understand information about mental illnesses, mental health care, diagnosis, treatment and recovery.

National Suicide Prevention Lifeline provides information on getting help, suicide warning signs and resources.  

Youth

Huntington’s Disease Youth Organization (HDYO) this site gives support, provides education and offers motivation to get involved for children and young adults. 

HDSA National Youth Alliance (NYA) motivates youth to get involved with HDSA local chapters, affiliates and support groups in efforts through education, fundraising, advocacy and awareness for HD.

Caregiver

Caregivers Media Group:Today’s caregiver provides information, support and guidance for family and professional caregivers. 

Family Caregiver Alliance provides information on various caregiver topics including grief and loss, taking care of yourself, community care options, long term care, advice care planning, caregiver tips, legal issues etc. 

Advance Care Planning

Aging with Dignity, 5 wishes information regarding how to express, discuss and document your wishes as you age. 

Caring Connections information about planning for the future, caring for someone, talking with loved ones and grieving a loss. 

Center for Health Care Decisions provides information and publications about end of life issues. 

Harvard Brain Tissue Resource Center information about how to be a brain donor and how the brain tissue is used and distributed. 

Financial

Social Security Administration provides information and application forms for Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI and Medicare.

U.S. Department of Labor, Employee Benefits Security Administration information regarding Consolidated Omnibus Budget Reconciliation Act (COBRA) 

U.S. Department of Labor Wage and Hour Division information regarding the Family Medical Leave Act of 1993 (FMLA) 

For other resources that we haven't posted, including questions you might not even know to ask, we encourage you to contact Philly Cure HD's Sherri McElfatrick. Contact Sherri at:
Sherri McElfatrick
215-219-3521
socialworker@phillycurehd.org