Parkinson's Disease and Movement Disorders Resources

The following links provide additional information related to Parkinson's disease and movement disorders. Please see additional resources on our Patient Support and Education page.

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Parkinson's Disease and Movement Disorders-related websites

Ataxia

The following links provide information and resources about ataxia:

  • National Ataxia Foundation: A nonprofit organization dedicated to improving the lives of persons affected by ataxia through support, education, and research

Dystonia

The following links provide information and resources about dystonia:

Essential tremor

The following links provide information and resources about essential tremor (ET):

  • International Essential Tremor Foundation (IETF): The mission of the IETF is to provide global educational information, services, and support to children and adults challenged by essential tremor, to their families and health care providers, as well as to promote and fund ET research.

Huntington's disease

The following links provide information and resources about Huntington's disease (HD):

  • European Huntington Association: Supports Huntington’s disease affected families throughout Europe by encouraging collaboration and raising awareness
  • European Huntington's Disease Network: Advances research, conducts trials, and improves care for those with Huntington's disease
  • Factor-H: A nonprofit social project founded in 2012 to help Huntington's disease-affected communities in Latin America, where HD is 500 to 1,000 times more prevalent in some regions and juvenile HD cases are abundant. Factor-H aims to raise awareness and facilitate medical and social assistance to these communities.
  • HDBuzz: Provides Huntington's disease research news in plain language, written by scientists
  • Hereditary Disease Foundation (HDF): A nonprofit organization founded in 1968 whose mission is to fund innovative research towards curing Huntington's disease by bringing together multidisciplinary research groups. HDF-funded research breakthroughs include the localization of the HD gene in 1983 and the identification of the specific HD gene and disease-causing defect in 1993.
  • Huntington's Disease Association: An association based in the United Kingdom whose mission is to enable everyone affected by Huntington's disease to live life to their full potential by improving care and support, educating families and the professionals who work with them, and championing the needs of the Huntington's community and influencing decision makers
  • Huntington's Disease Society of America: The premier nonprofit organization dedicated to providing community services, education, advocacy, and research funding in support of those living with Huntington's disease
  • Huntington's Disease Youth Organization (HDYO): A nonprofit organization that provides appropriate information, education, and support to young people affected by Huntington's disease
  • Huntington's Outreach Project for Education at Stanford (HOPES): A team of faculty and undergraduate students at Stanford University dedicated to making scientific information about Huntington's disease more readily accessible to the public

Parkinson's disease

The following links provide information and resources about Parkinson's disease (PD):

  • American Parkinson Disease Association: This organization raises funds and awareness, and builds centers, staffed by healthcare professionals who provide direct patient and caregiver support.
  • APDA Rehab Resource Center at Boston University: Access toll-free "helpline" to speak with a licensed physical therapist who can answer questions about exercise, provide information about programs in the caller’s area and provide educational materials
  • Binter Center for Parkinson's Disease & Movement Disorders: The University of Vermont Medical Center provides comprehensive evaluation and treatment of patients with movement disorders.
  • Brian Grant Foundation (BGF): Provides proven tools to improve the well-being of people with Parkinson’s. BGF was established in 2010, following Brian’s diagnosis in 2008 at the age of 36. Though there is no cure for Parkinson’s, exercise, nutrition and a supportive community can help manage symptoms, maintain overall health and prevent other serious illnesses.
  • Dance for PD®: Locate dance and movement programs inspired by the internationally-acclaimed dance classes for people with PD developed by the Mark Morris Dance Group and the Brooklyn Parkinson Group.
  • Davis Phinney Foundation for Parkinson's: Information and resources to improve quality of life for people with PD and caregivers
  • International Parkinson and Movement Disorder Society: An international professional society of clinicians, scientists, and other healthcare professionals who are interested in Parkinson's disease, related neurodegenerative and neurodevelopmental disorders, hyperkinetic movement disorders, and abnormalities in muscle tone and motor control
  • Live Well with Parkinson's: Information about medications, diet and nutrition, swallowing issues, and management of nausea, constipation, weight loss, and protein considerations for those taking levodopa
  • LSVT Global: Locate clinicians who provide the evidence-based speech, physical and occupational therapies known as LSVT LOUD and LSVT BIG
  • Michael J. Fox Foundation for Parkinson's Research: Michael J. Fox's nonprofit foundation to raise funds for Parkinson's disease research. This website also contains key Parkinson's Action Network (PAN) content.
  • Northwest Parkinson's Foundation: This nonprofit organization aims to optimize the quality of life of the Parkinson's community in Alaska, Idaho, Montana, Oregon and Washington, but its website content and Weekly Parkinson's eNews are excellent and relevant to all.
  • Our Parkinson's Place: A blog by Margaret Swope, who copies news articles about Parkinson's disease, dementia, the brain and Parkinson's with dystonia, and announcements for events and fundraising for PD research
  • Parkinson's Action Network (PAN): The Parkinson's Action Network (PAN) is no longer in operation. Key PAN staff and programs have transitioned to The Michael J. Fox Foundation for Parkinson's Research (MJFF), and content from the PAN website now lives on the website of the Michael J. Fox Foundation for Parkinson's Research.
  • The Parkinson Alliance: This organization hosts the Parkinson's Unity Walk in New York City each spring.
  • Parkinson's Disease Research, Education and Clinical Centers (PADRECCs): PADRECCs and VA PD Consortium Centers were established by the U.S. Department of Veteran Affairs in 2001 to provide specialty care to the estimated 80,000 veterans living with PD and other movement disorders. Of special note: Patient Education Brochures, Hospitalization Plan for PD, and "My Parkinson's Story," a series of short videos addressing important aspects of PD featuring people with PD, caregivers, and clinicians.
  • Parkinson's Foundation: The nonprofit Parkinson's Foundation was formed by the merger of the National Parkinson Foundation (NPF) and the Parkinson's Disease Foundation (PDF), both founded in 1957. This leading global Parkinson's organization supports Parkinson's-related research, patient care, education, training, outreach and public advocacy.
  • Parkinson's Life: A voice for the international Parkinson's community. Interviews, personal perspectives, recipes and nutrition, health and fitness, research, resources and more
  • Parkinson Voice Project: A nonprofit whose mission is to preserve the voices of individuals with Parkinson’s and related neurological disorders through intensive speech therapy, follow-up support, research, education, and community awareness. Watch lectures videotaped at their Parkinson's Education Center in Richardson, Texas.
  • PWR!® (Parkinson Wellness Recovery): The mission of this organization is to develop "Parkinson disease-specific neuroplasticity-principled exercise programs that hold promise to slow disease progression, improve symptoms, restore function, and increase longevity and quality of life."
  • Rock Steady Boxing: Locate non-contact boxing-inspired classes that help people with PD enhance quality of life and build strength, flexibility, speed and balance.

Parkinson-plus syndromes/Atypical parkinsonisms

The following links provide information and resources about Parkinson-plus syndromes/Atypical parkinsonisms, including corticobasal degeneration (CBD), multiple system atrophy (MSA), Lewy body dementia (LBD), and progressive supranuclear palsy (PSP):

  • Brain Support Network: A nonprofit organization focusing on the four atypical parkinsonism disorders: corticobasal degeneration, multiple system atrophy, Lewy body dementia, and progressive supranuclear palsy
  • CurePSP: Learn more about atypical parkinsonisms such as supranuclear palsy, multiple system atrophy, and corticobasal degeneration (CBD); locate support groups; and find other resources.
  • Defeat MSA: A U.S.-based 501(c)3 charity that aspires to balance efforts to support patients, educate medical professionals, raise public awareness, and nurture promising research. Resources include a Loaner Closet Program that provides donated durable medical equipment to those with MSA.
  • Lewy Body Dementia Association (LBDA): LBDA is a nonprofit organization dedicated to raising awareness of the Lewy body dementias, supporting people with LBD, their families and caregivers and promoting scientific advances. The Association's purposes are charitable, educational, and scientific.

Restless legs syndrome (RLS)

The following links provide information and resources about restless legs syndrome (RLS):

Tourette syndrome and tic disorders

The following links provide information and resources about Tourette syndrome (TS) and tic disorders:

  • The Tourette Association of America: The premier national non-profit organization dedicated helping those affected by Tourette and tic disorders by raising public awareness; fostering social acceptance; advancing scientific understanding, treatment options and care; and providing education, advocacy and community support

Wilson disease

The following links provide information and resources about Wilson disease:

  • Wilson Disease Association (WDA): The WDA funds research and promotes the identification, education, treatment, and support of patients and other individuals affected by Wilson disease.

General

The following links provide general information and resources related to movement disorders:

  • Brain & Life: Neurology for Everyday Living: "Powered by trusted neurologists from the American Academy of Neurology, we are the only website backed by more than 34,000 neurologists committed to keeping you and your family better informed about neurologic disorders and how to keep your brain healthy." Free subscription to Brain & Life™ (formerly Neurology Now®)
  • ClinicalTrials.gov: Use this registry and results database of clinical studies to locate research opportunities in which you might participate.
  • HealingWell.com: A website that provides information, resources, and online forums.
  • Home Remodeling for Disability and Special Needs: What You Need to Know: This guide from Expertise is designed to help make the federal grants available to seniors, veterans, and disabled people much easier to understand and take advantage of, particularly for remodeling homes for accessibility. It includes many great remodeling ideas for accessibility and safety.
  • Job Accommodation Network (JAN): JAN's Accommodation and Compliance Series is designed to help employers determine effective accommodations and comply with Title I of the Americans with Disabilities Act (ADA). This specific publication provides information about Parkinson's disease, ADA information, accommodation ideas, and resources for additional information.
  • NORD® National Organization for Rare Disorders: Support and information for those living with a “rare disease,” which is defined in the United States as a condition affecting fewer than 200,000 people. Examples of rare movement disorders include Corticobasal Degeneration, Huntington’s disease, Multiple System Atrophy, Progressive Supranuclear Palsy, and Wilson disease. NORD’s Patient and Caregiver Resource Center provides free videos, webinars and information about medication assistance programs and other financial assistance.
  • Sleep and Neurological Conditions: Information about sleep problems associated with neurological conditions, and a list of suggested mattresses, pillows and assistive bedding devices