Parkinson's Disease Resources
The leadership of the national Parkinson's disease community consists of several non-profit organizations, each with a different focus and specialty, all of which are working towards on finding a cure and improving care and quality of life. Following is a list of the major national organizations that work together to serve the Parkinson's community, along with their relevant contact information.
The Michael J. Fox Foundation for Parkinson's Research
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s.
Parkinson's Disease Foundation
The Parkinson's Disease Foundation (PDF) is working for the nearly one million people in the U.S. living with Parkinson's by funding promising scientific research and supporting people with Parkinson's, their families and caregivers through educational programs and support services.
Phone: 800-457-6676 or 212-923-4700
National Parkinson Foundation
The National Parkinson Foundation (NPF) is a leading national organization with an extensive network of Centers of Excellence, chapters, and support groups in the United States, Canada, and internationally. NPF has a singular focus on improving the quality of care in Parkinson’s disease.
The Parkinson Alliance
The Parkinson Alliance is a national non-profit organization dedicated to raising funds to help finance the most promising research to find the cause and cure for Parkinson's disease.
Phone: 800-579-8440 or (609) 688-0870
The Parkinson's Unity Walk
The Parkinson's Unity Walk (PUW) began in 1994 through the dedicated efforts of patients, families, support groups, and friends who were affected by Parkinson's disease. Their main goal is to raise awareness and funds for research to find a cure for Parkinson's.
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.
Phone: 800-223-2732 or 718-981-8001
Davis Phinney Foundation
The Davis Phinney Foundation's mission is to improve the lives of those living with Parkinson's disease today and in the future.
The web has become an increasingly important tool for people in the Parkinson's disease community to communicate. In addition to the national Parkinson’s disease organizations, the links we have posted here are just a few of the hundreds of Parkinson's sites in America and around the world. These sites provide a wide array of information that you may find relevant as you learn more about Parkinson's disease and the diverse Parkinson's community.
If you would like PAN to feature a link to your Parkinson's community website, please send us a request with the URL and a brief description of your site.
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.
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 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.
Almost anyone who has heard of Parkinson's Disease knows about the physical symptoms of PD, including tremors, generalized slowness of movement, stiffness of limbs, and gait or balance problems. What is less well known about PD is that it is not the motor symptoms that tend to do the most harm to quality of life. Cognitive changes coupled with stress is more often than not the culprit that precipitates job loss and family discord.
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.
Columbia Parkinson's Support Group, Columbia SC
The primary mission of the Columbia Parkinson's Support Group is to provide support, encouragement, information, contacts, and education for Parkinson's patients, caregivers, family members and others who are working in related fields or have an interest in Parkinson's disease.
Congress.org is a joint venture of two Washington, D.C. area firms with expertise in communicating with Congress.
Embryonic Stem Cells
The University of Wisconsin-Madison site on the science of stem cells provides basic information such as what stem cells are, where they come from and how they can be used to treat disease. The site includes an interesting time lapse video of stem cell growth.
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.
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.
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.
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.
The official government benefits website, this free and confidential site helps you find the government benefits you may be eligible to receive.
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.
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.
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 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.
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.
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’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.
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.
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.
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.
Research! America's mission is to make medical research a much higher national priority.
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.
This site offers political updates of Washington, D.C. activity. It is the newspaper of Capitol Hill.
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.
We Move promotes knowledge and understanding of movement disorders to help move the healthcare profession and patients forward towards better quality of treatment and care.
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