Patient and Family Support
Resources for Patients
Here at Penn, our top priority is the well-being of our patients.
The work for our patients goes beyond the walls of the HD center at Penn, but to communities all around where we make sure that our patients are provided with care and resources to address their concerns and answer their questions.
See below for several resources to assist you with your specific needs. If you have any other questions or concerns for your specific patient care, please contact us and we will be happy to assist you with your case!
Links to Helpful Resources!
Please click on the toggles to reveal the resource links.
Find local and online community and social support.
Community & Social Support
- HDSA Community & Social Support
- Includes information on various resources to support HD families.
- HDSA's Resource Locator
- Find services and providers in your area, including long-term care, in-home care resources, adult day care centers, and legal resources.
- Support Groups:
- Individual Counseling:
- Psychology Today
- Find therapists, teletherapy, psychiatrists, treatment centers, and support groups.
- HDSA's Free Telehealth Program powered by Amwell
- Talk with mental health professionals from the comfort of your home. Over the course of a year, you may schedule up to 8 free visits with an HD knowledgeable licensed social worker or psychologist through HDSA's program. Health insurance, Employee Assistance Programs (EAPs), and colleges/universities may also provide funding and services for individual counseling.
- Psychology Today
Learn about Social Security, Medicare, and Medicaid and how to apply.
Social Security, Medicare, and Medicaid Resources
- How to Apply for Social Security
- Including Disability, Retirement and Spousal Benefits
- How to Apply for Medicare
- Medicare.gov is a website that will give your information on health and drug plans as well as estimate Medicare costs and compare coverage options.
- How to Apply for Medicaid:
Resources for finding home healthcare services, residential care facilities, and hospice/palliative care.
Finding Care in the Community
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Local Area Agency on Aging (AAA) by County:
- Medicare.gov: Find home healthcare services, residential care facilities (i.e. Nursing Homes, Continuing Care Retirement Communities, etc.), and hospice care.
- Senior Living Brokers: For free help searching for a residential care facility.
- Hospice & Palliative Care
- National Hospice and Palliative Care is an organization representing hospice and palliative care providers. Their website provides education and resources.
- Long-Term Care
- SeniorLiving.org is a website that educates you on long-term care. There is also an option to search for local facilities.
Information regarding living wills and end-of-life care.
Advance Directives
- Information About Advance Directives of Penn Medicine
- 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.
Additional resources to support patients and families.
Additional Resources
- For Veterans with Huntington's Disease
- Huntington's Disease Outreach Project for Education at Stanford (HOPES)
- HOPES is a student-run project at Stanford University dedicated to making scientific information about HD more readily accessible to patients and the public.
- Family Planning Resources
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HelpCureHD’s mission is to provide grant funding for families in financial need for pre-implantation genetic testing (PGT) and in vitro fertilization (IVF) to have babies free from the gene that causes Huntington’s Disease.
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- Driving Resources:
- Driving Resources by State (PA, NJ, DE)
- Provides some driving evaluation sites in the area and cost information.
- American Occupational Therapy Association (AOTA) Driving Rehab Search
- Provides a comprehensive list of driving evaluation sites.
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Driving Evaluations by an Occupational Therapist (OT)
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Explains the process of receiving a driving evaluation by an OT.
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- What Occupational Therapists (OTs) Can Do to Help
- Overview of what OTs can do to help with driving, such as providing screening, assessment, and equipment.
- Driving Resources by State (PA, NJ, DE)