Resources

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.
www.HDSA.org

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

Huntington Study Group provides information about research and HD basics.
www.huntington-study-group.org

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.
www.web.stanford.edu/group/hopes

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.
www.help4hd.org

Genetics

HelpCureHD has a PGT-IVF grant program for families affected by Huntington’s Disease.
www.helpcurehd.org

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

Managing Behavior

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

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

National Suicide Prevention Lifeline provides information on getting help, suicide warning signs and resources. www.988lifeline.org

Youth

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

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.
www.nya.hdsa.org

Caregiver

Caregivers Media Group provides information, support and guidance for family and professional caregivers.
www.caregiver.com

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.
www.caregiver.org

Advance Care Planning

Aging with Dignity, has information regarding how to express, discuss and document your wishes as you age.
www.agingwithdignity.org

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

Harvard Brain Tissue Resource Center information about how to be a brain donor and how the brain tissue is used and distributed.
www.mcleanhospital.org/brain-bank

Financial

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

U.S. Department of Labor, Employee Benefits Security Administration has information regarding Consolidated Omnibus Budget Reconciliation Act (COBRA).
www.dol.gov/ebsa

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 at 215-219-352.