Note: Information is maintained for informational purposes only.  Inclusion in the Resource Directory does not constitute endorsement by HDSA.

Advance Directives Resources

Assistive Technology Resources

Brain Donation Resources

Caregiving Resources

Disability Resources

Facilities Resources

Government Resources

HD Websites

Medical Resources

Transportation Resources

Other Resources

ADVANCE DIRECTIVES RESOURCES

General Resources

American Bar Association Commission on Law and Aging
The American Bar Association has developed several toolkits for you to use as you consider and implement your Advance Directive.

Consumer Toolkit on Health Care Advance Planning
This toolkit includes links to workbooks that assist with advance care planning as well as links to forms. 

ABA Commission on Law & Aging: Healthcare Decision Making
This comprehensive toolkit covers how to choose a health care agent, questions to help you make an informed decision about medical interventions at different stages of illness, questions of personal and spiritual values, and decisions about care at end of life and beyond, as well as a quiz for your health care agent to test their understanding of your wishes:

Caring Conversations®
Caring Conversations®, by the Center for Practical Bioethics is designed to guide individuals through the process of advance care planning. Each copy of Caring Conversations includes a Health Care Directive form and a Durable Power of Attorney for health care form. The site also has links for Courageous Conversations, designed for military veterans, and Caring Conversations for Young Adults, a starting point for young adults and their families to talk about topics like organ donation, do-not-resuscitate orders, and serious illness.

State specific forms

Caring Connections
Caring Connections provides links to forms for every state.

Five Wishes
Available in over 25 different languages, this site provides links to an alternative Advance Directive document.

 

Psychiatric Advance Directives

National Resource Center on Psychiatric Advance Directives
The National Resource Center on Psychiatric Advance Directives offers information about preparing Advance Directives for individuals with psychiatric disorders and includes information on which states recognize these documents.

National Alliance for Mental Illness (NAMI)
NAMI provides information about states with specific psychiatric Advance Directive laws.

 

ASSISTIVE TECHNOLOGY RESOURCES


Alternative Financing Programs
Alternative financing progrms offer financing for the purchase of assistive technology by people with disabilities. These programs provide loans at more favorable terms than you might find at at traditional lender.

AbilityHub
This web site provides information on adaptive equipment and alternative methods that aid individuals with disabilities or health conditions in accessing computers.

ABLEDATA
ABLEDATA provides extensive information about assistive technology products and rehabilitation equipment available both in the United States as well as internationally. While they do not sell products themselves, they are able to aid buyers in locating companies that do.

Assistivetech.net
This site offers information on assistive technology, as well as a database to aid in finding vendors and products for individuals with disabilities.

The Center for Assistive Technology & Environmental Access (CATEA)
CATEA focuses on assistive technology, promoting accessible environments, and barrier-free education. Their search function allows users to easily find the equipment most useful for them.  They also link to a number of other organizations that may be useful.

National Assistive Technology Technical Assistance Project
Sponsored by RESNA, this organization's mission is to reduce barriers by increasing access to assistive technology for individuals with disabilities. This site also has information on funding assistive technology, as well as universal design.



BRAIN DONATION RESOURCES

Harvard Brain Tissue Resource Center
Harvard Brain Tissue REsrouce Center accepts brains from around the country and provides samples to researchers around the world.

National Human Tissue Resource Center
The National Human Tissue Resource Center accepts brain donations nationally for future research.

CAREGIVING RESOURCES

Center for Personal Assistance Services
The Center for Personal Assistance Services offers a wealth of information on personal assistance services (i.e. assistance in the home and at work in completing daily tasks) in the United States, as well as a searchable by state feature that enables users to gain additional information on disability services in their state.

Families USA - The Medicaid Clearinghouse
Families USA is a nonprofit organization that provides not only extensive information on Medicaid, but works on a variety of levels to ensure high-quality and inexpensive healthcare for all Americans.

National Family Caregivers Association (NFCA)
The mission of NFCA is to empower and enable family caregivers to act on behalf of themselves and their loved ones while advancing the principles of health and well being. This is accomplished through the provision of links to numerous organizations and programs designed to aid family members and professionals in caring for individuals with disabilities.

NeedyMeds
This site offers a list of pharmaceutical programs and organizations that can assist individuals in buying medications they cannot afford.

Caring Voice Coalition
This site offers support for patients diagnosed with specific chronic or life-threatening diseases.  the core programs include Financial Assistance, Insurance Education, Social Security Disability assistance and appeals for denied coverage. 

Lift Caregiving
Lift Caregiving provides a holistic, content rich-resource designed specifically to support busy caregivers.  You can take comfrot from those who have walked in your shoes and find practical advice and tools for getting through and moving forward.

Lotsa Helping Hands

Lotsa Helping Hands offers free tools designed to make life easier for caregivers and volunteers.  The hallmark of the service is the caregiver-focused calendar, which enables members to schedule and sign up for tasks that provide respite for the caregiver including meals for the family, rides to medical appointments, and visits.

 

DISABILITY RESOURCES

American Association of People with Disabilities (AAPD)
AAPD continually updates their website with the latest news and information on issues that affect those with disabilities.

National Organization of Social Security Claimants' Representatives (NOSSCR)
This page has a FAQ on Social Security as well as information on attorneys and paralegals that represent Social Security and Supplemental Security Income claimants.

FACILITIES RESOURCES

Adult Day Care Finder
Offered in community centers and through some senior programs, Adult Day Care provides social, recreational, meals, and sometimes transportation services.

A Place for Mom
This website offers help in finding facilities for people over the age of 55.  They have a variety of resources for people with a diverse set of needs.

AboutAssistedLiving.Org
Written by a group of medical professionals, AboutAssistedLiving.org is meant to serve as a resource for anyone looking for information on placing themselves or a loved-one into an assisted living or elder care facility.

Medicare Nursing Home Compare
This tool has detailed information about every Medicare and Medicaid-certified nursing home in the country.

The National Respite Locator
The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area to match their specific needs

Nursing Home Locator
This tool provides ratings, detailed reports, graphics and analysis of every Medicare and Medicaid certified Nursing Home in the USA.

The National Hospice and Palliative Care Organization
The NHPCO is a nation-wide organization that provides help for those who would like information or materials concerning end of life care.  On their website you will find educational materials including free brochures to download, information on upcoming workshops and webinars, and contact information for referrals for hospice care. 

SeniorAdvisor.com
Provides ratings and reviews on thousands of long term care and assisted living facilities around the country.

 

GOVERNMENT RESOURCES

 

Centers for Medicare and Medicaid Services
This government site provides information on Medicaid waiver programs by state, low cost health insurance, regulations and guidelines, research and statistics and Medicare.

GovBenefits.gov
GovBenefits.gov is a partnership of Federal agencies with a shared vision - to provide improved, personalized access to government assistance programs.

State and Local Government Internet
State and Local Government on the Net is a frequently updated directory of links to government sponsored and controlled resources on the Internet. The directory provides convenient one-stop access to the websites of thousands of state agencies and city and county governments.

Health Insurance Marketplaces
This website provides education and information on Health Insurance Exchanges and Marketplaces, and helps you find local resources for Health Care Insurance Exchanges.

HD WEBSITES

CHDI Foundation
CHDI is a private, not-for-profit research organization that works with an international network of scientists to discover drugs that slow the progression or delay the onset of Huntington's disease.

HDtrials.org
HDTrials.org has been created to enable clinical trial participation, the HDTrials.org web site will provide quick notification to Huntington families of opportunities for participation in clinical trials and studies through a confidential email list.

Huntington's Disease Lighthouse
The HDLighthouse mission is to present and explain the latest research findings so that HD families can become proactive in their care, have hope for the future, and make good decisions in the present.   

Huntington's Disease Advocacy Center
This site's goal is to find answers for the numerous questions that pHDs and those who give care to pHDs face. They discuss it's effect on those who've inherited the disease, and to try to supplement the information that your neurologist, physician, or psychiatrist provides to you regarding HD. They also provide a forum for those who have offered to share their experiences regarding issues that simply don't have "answers" but rather options to be considered such as feeding tubes, nursing home placement and the like.

Huntington's Disease Drug Works
HDDW's single goal: the earliest possible therapeutic benefit is correctly identified and used in individuals of this generation of Huntington's people.  Make sure to read about the trial agents.

The Hereditary Disease Foundation
The Hereditary Disease Foundation sponsors workshops, grants, fellowships, and targeted research contracts to solve the mysteries of genetic disease and develop new treatments and cures.

National Research Roster for Huntington's Disease Patients and Families
The Roster is a unique nationwide information resource dedicated to assisting scientific research on Huntington's disease.  The Roster computerizes the names of families, including information about the history of HD in the family (family trees) and other related data. This information identifies HD patients and families who are interested in participating in research project.

Stanford Hopes
HOPES is a student-run project at Stanford University dedicated to making scientific information about Huntington's disease more readily accessible to patients and the public.

 

MEDICAL RESOURCES

Get Palliative Care
Getpalliativecare.org provides valuable information defining palliative care and providing resources on finding approrpiate palliative care in your area. 

Centers for Medicare and Medicaid Services
This government site provides information on Medicaid waiver programs by state, low cost health insurance, regulations and guidelines, research and statistics and Medicare.

Families USA - The Medicaid Clearinghouse
Families USA is a nonprofit organization that provides not only extensive information on Medicaid, but works on a variety of levels to ensure high-quality and inexpensive healthcare for all Americans.

GoodRx
GoodRx allows you to search for specific medication to see which pharmacy has the best price. 

Medline
National Library of Medicine sponsors Medlineplus, a popular health information site.

National Organization for Rare Disorders (NORD)
NORD is a nonprofit organization that has an extensive database, a library of links, free booklets for physicians and more as they work towards the identification, treatment and cure of rare disorders.

NeedyMeds
This site offers a list of pharmaceutical programs and organizations that can assist individuals in buying medications they cannot afford.

Paying for Senior Care
This website offers a searchable database of financial assistance options and ways to reduce the cost of caring for a loved one, be that at home or in residential care.  The organization's primary focus is on non-medical care but also includes assistance for medical equipment and home modifications to accommodate for the challenges associated with progressive conditions, disabilities and aging.

PACE4You
PACE4You offers information on the Program for All-inclusive Care for the Elderly, an in-home care program available to people who qualify.

Together RX Access
Together RX Access is a prescription savings program for people who do not have prescription drug coverage and are not eligible for Medicare.   It provides families with access to savings on hundreds of brand-name and generic prescriptions, as well as resources about access to coverage options.

TRANSPORTATION RESOURCES

AMS Vans
AMS Vans has listings of adapted vans which are sold at wholesale prices.  Rear and side entry accessible vehicles available, and front door delivery available nationwide.

 

OTHER RESOURCES

 

National Financial Resources Guidebook for Patients
The Patient Advocate Foundation's National Financial Resources Guidebook is a Directory of information for patients seeking financial relief for a broad range of needs including housing, utilities, food, transportation to medical treatment, and children's resources.

 Dream Foundation
Provides a "dream" for adults facing a life-threatening illness.