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.
HelpCureHD has a PGT-IVF grant program for families affected by Huntington’s Disease.
National Human Genome Research Institute is focused on advances in genomics research.
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. www.988lifeline.org
Huntington’s Disease Youth Organization (HDYO) 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.
Caregivers Media Group 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, has 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.
Harvard Brain Tissue Resource Center information about how to be a brain donor and how the brain tissue is used and distributed.
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 has information regarding Consolidated Omnibus Budget Reconciliation Act (COBRA).
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.
On HD Buzz you can sign up to follow the latest HD research and you can sign up for their latest news through Twitter, Facebook, Email or RSS Subscription.
This Week In Huntington’s Disease Research keeps you up-to-date on HDSA research activities, recently published work about Huntington’s disease, historical moments in HD research and more.
On HD Trial Finder you can identify all clinical trials that match your profile and the closest trial sites. They can also update you when new studies open that match your profile.
Enroll HD is a collaboration between Huntington’s disease families, clinicians, and researchers to accelerate progress toward effective treatments.
HDSA Research Webinars invites clinicians and scientists to present directly to families about their recent work, online and at our National Convention.