The Parkinson’s Action Network (PAN) has compiled a list of resources below to better serve people with Parkinson’s, their caregivers, and their friends and families. Click on the headings below for resources under those categories. Please feel free to call us at 800-850-4726 or email [email protected] if you have any other questions.
- Benefits & Insurance
- Clinical Trials
- Finding a Doctor or Specialist
- Parkinson’s Disease Organizations
- Other Health Organizations
Benefits & Insurance
Benefits for People with Disabilities
The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. This site provides information about the criteria necessary to qualify for assistance, application forms, and frequently asked questions.
The official government benefits website, this free and confidential site helps you find the government benefits you may be eligible to receive.
Healthcare.gov serves as the Health Insurance Marketplace established by the Affordable Care Act.
Patient Advocate Foundation
A non-profit organization that serves as a liason between patients and their insurers, employers, and/or creditors to resolve insurance, job discrimination, and/or debt crisis matters relative to their diagnosis through case managers and attorneys. The Foundation seeks to safeguard patients through assuring access to care, maintenance of employment and preservation of their financial stability.
RxAssist Patient Assistance Program Center
RxAssist is a nationally recognized, web based medication assistance resource center. Established in 1999 with funding from The Robert Wood Johnson Foundation, RxAssist gives providers, advocates, consumer and caregivers comprehensive, up-to-date information on medications in an easy to use format. RxAssist is part of the Center for Primary Care and Prevention at Memorial Hospital of Rhode Island.
The Center for Information & Study on Clinical Research Participation (CISCRP)
The Center for Information and Study on Clinical Research Participation (CISCRP) is a nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research participation and the role that each party plays as a participant in the process.
The U.S. National Institutes of Health , through its National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies. By simply typing in the words Parkinson’s disease, you can get a complete listing of all clinical trials for Parkinson’s disease and contact information for each study.
Fox Trial Finder
Fox Trial Finder was developed by The Michael J. Fox Foundation to help people find opportunities to participate in Parkinson’s clinical trials. Play a part in making breakthroughs possible. Find your trial matches and connect with trial teams on Fox Trial Finder today.
ResearchMatch.org is a not-for-profit secure website, designed to provide people who are interested in participating in research the opportunity to be matched with studies that may be the right fit for them.
PAN has a section on caregiving here.
Family Caregiver Alliance
Through its pioneering programs of information, education, services, research and advocacy, the FCA sustains and supports the families and friends providing long term care.
Mr. Long Term Care
An information site on long term care.
National Family Caregivers Association
An information source for caregivers nationwide. The site also provides contacts for support groups.
National Respite Coalition
The National Respite Coalition works to secure quality, accessible, planned and crisis respite services for all families and caregivers in need of such services in order to strengthen and stabilize families, and enhance child and adult safety.
National Respite Locator Service
The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area. The service is also useful when a family travels or must move to another state.
Well Spouse Association
The Well Spouse Association, a non-profit 501(c)(3) membership organization, advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. We offer peer to peer support and educate health care professionals and the general public about the special challenges and unique issues “well” spouses face every day.
Finding a Doctor or Specialist
Morris K. Udall Parkinson’s Disease Research Centers of Excellence
The Morris K. Udall Parkinson’s Disease Research Centers of Excellence fund Parkinson’s research at 14 centers across the country. These centers utilize a multidisciplinary research approach to learn about the fundamental causes of Parkinson’s disease as well as to improve the diagnosis and treatment of Parkinson’s and related neurodegenerative disorders.
Movement Disorder Specialist Finder
Partners in Parkinson’s and the International Parkinson and Movement Disorder Society have collaborated to create a resource that searches for movement disorder specialists in the United States. A movement disorder specialist is a neurologist who has received additional training in Parkinson’s disease and other movement disorders including dystonia, chorea, tics and tremors.
Parkinson’s Disease Research, Education, and Clinical Centers
The Veterans Affairs Department created six regional Parkinson’s Disease Research, Education, and Clinical Centers (PADRECCs), which provide comprehensive, state-of-the-art care to veterans with Parkinson’s disease.
Partners in Parkinson’s
The Michael J. Fox Foundation for Parkinson’s Research & AbbVie have partnered to create a multifaceted strategic health initiative, called Partners in Parkinson’s, which aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.
University of Florida Center for Movement Disorders & Neurorestoration
The University of Florida Center for Movement Disorders & Neurorestoration delivers motor, cognitive and behavioral diagnoses as well as various treatments all in one centralized location.
University of Maryland Medicine Parkinson’s Disease and Movement Disorders Center
The Maryland Parkinson’s Disease and Movement Disorders Center at the University of Maryland offers comprehensive and expert diagnostic, medical, surgical and rehabilitative services for patients with Parkinson’s disease and parkinsonism.
Virginia Commonwealth University Parkinson’s and Movement Disorders Center
Combining multidisciplinary evaluation, research, and education, the VCU Parkinson’s and Movement Disorders Center provides a coordinated approach to combat movement disorders. The highly integrated, multidisciplinary center brings together neurologists, neuropsychologists and physical therapists to translate discoveries into real-world treatments.
Parkinson’s Disease Organizations
This list does not include our national affiliated partners, which you can learn more about here.
American Parkinson Disease Association
American Parkinson Disease Association was founded to “ease the burden and find a cure” for Parkinson’s disease. APDA raises funds for researchers whose work shows promise and hope of new breakthrough.
American Parkinson Disease Association National Young Onset Center
The APDA National Young Onset Center focuses on developing education and support services that address the unique needs of young people with Parkinson’s disease, their family members and friends as well as their healthcare team.
European Parkinson’s Disease Association
EPDA is the only European umbrella organization for Parkinson’s disease. It represents 45 member organizations and is the advocate for the rights and needs of over 1.2 million people with Parkinson’s and their families.
Parkinson’s Disease Resource Center offers news, treatment information, and a directory of useful sites.
The Melvin Weinstein Parkinson’s Foundation
The Melvin Weinstein Parkinson’s Foundation is a non-profit organization dedicated to purchasing equipment and health supplies necessary to maintain a safe and healthy environment for Parkinson’s Patients. With the aid of support groups they locate Parkinson’s Patients who have financial and medical needs, and find a way to help them.
The Northwest Parkinson’s Foundation
The Northwest Parkinson’s Foundation (NWPF) is a Washington state non-profit charity, established to make the Northwest a leading world center of movement disorders knowledge and treatment.
Parkinson Pipeline Project
The Parkinson Pipeline Project is a grassroots group of advocates whose goal is to provide the patient perspective in the treatment development process.
ParkinsonsHealth.com offers tips and tools for living with Parkinson’s disease, information on symptoms and treatments, and animated illustrations related to PD. The site also offers registration for Life in the Balance™, a free newsletter for people and families living with PD.”
The Parkinson’s Institute
The Parkinson’s Institute was founded to provide patient services and carry out medical research on movement disorders. Their Mission is to find the cause and cure for movement disorders; investigate better treatment and diagnostic tools; and to develop prevention strategies. Physicians at the Institute focus solely on movement disorders.
Part personal journal, part informational, PD Plan4Life is a vehicle for sharing individual challenges with and triumphs over Parkinson’s, as well as “secret weapons”— exercise, participation in clinical trials, and advocacy.
Other Health Organizations
BrainFacts.org seeks to share what neuroscientists know, explore what they don’t yet know fully, and discuss how today’s research advances understanding. The site is a public information initiative of The Kavli Foundation, the Gatsby Charitable Foundation, and the Society for Neuroscience, all leading global nonprofit organizations working to advance brain research. Leading neuroscientists from around the world form the BrainFacts.org editorial board.
The Coalition for the Advancement of Medical Research (CAMR)
is comprised of nationally-recognized patient organizations, universities, scientific societies, foundations, and individuals with life-threatening illnesses and disorders, advocating for the advancement of breakthrough research and technologies in regenerative medicine – including stem cell research and somatic cell nuclear transfer – in order to cure disease and alleviate suffering.
FDA Patient Network
An interactive tool for educating patients, patient advocates, and consumers on how their medications, both prescription and over-the-counter, and medical devices move from the realm of idea to the realm of the marketplace.
National Health Council
The National Health Council (NHC) provides a voice for the millions of people with chronic diseases and disabilities and their family caregivers.
The National Institute of Environmental Health Sciences
The National Institute of Environmental Health Sciences (NIEHS) focuses on preventing development of Parkinson’s disease by identifying environmental triggers of this disease and identifying how individuals differ in their susceptibility to these triggers. Additional research is directed toward defining the biochemical pathways of early Parkinson’s disease development. Findings from such work may ultimately lead to therapeutic interventions
The National Institute of Neurological Disorders and Stroke
This NIH disease specific web site was developed to facilitate research efforts on Parkinson’s Disease, track the progress of the PD Research agenda and Matrix activities, and provides both the research and lay community with information and resources. The Parkinson’s disease research portfolio is managed by the NINDS Neurodegeneration Group.
Research! America’s mission is to make medical research a much higher national priority.