The web has become an increasingly important tool for people in the
Parkinson's disease community to communicate. The links we have
posted here are just a small sample of hundreds of Parkinson's sites in
America and around the world. These sites provide 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,
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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.
Braintalk A web forum for those with PD or their caregivers.
Clinical Trials 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.
Clognition 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. Clognition 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 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.
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.
GovBenefits.gov The
official government benefits website, this free and confidential site
helps you find the government benefits you may be eligible to receive.
The Grassroots Connection A
website designed to increase your knowledge about neurological health
and related issues and to facilitate your participation in regaining
and maintaining quality of life through group advocacy.
HealingWell.com Parkinson's Disease Resource Center offers news, treatment information, and a directory of useful sites.
Hope For A Cure Hope For A Cure Foundation for Parkinson's
Research was established to increase awareness and raise funds for Parkinson’s
disease.
Louie, Louie: A Portrait in Parkinson's Louie,
Louie offers the different perspectives from the Salzman family members
that can be extremely beneficial to doctors, nurses and all others
involved in the treatment and care of patients with Parkinson’s
disease. It provides a teaching tool that can give them a better
ability to respond to their patients and their family members. There
are millions of families who have to face the challenges of care
giving. This film can help them feel more comfortable talking about
their own situations and finding their own answers.
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.
Motivating Moves for People With Parkinson's The
importance of exercise for a person with Parkinson's has long been
recognized as essential to disease management and improved quality of
life. Motivating Moves for People with Parkinson's is an
award-winning program of 24 seated exercises offered by the Parkinson's
Disease Foundation. The exercises are specifically designed to address
typical Parkinson's movement challenges such as stability, flexibility,
posture, vocal range and facial expressivity.
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 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. Through education, consultation, and participation
with all stakeholders, including industry and the FDA, the
Parkinson Pipeline Project hopes to increase clinical trial
participation and accelerate approved treatment options.
ParkinsonsHealth.com 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.
The Parkinson's Radio Network PRN
will be audio broadcasting anything and everything that pertains to
Parkinson's disease and the Parkinson’s Community. It will feature
pre-recorded symposiums, meetings, and telephone interviews with
leaders in the Parkinson's field.
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.
PD Blogger PDBlogger
is an English and Spanish information website. Its Spanish pages fill a
unique need in Arizona and possibly in the United States with the goal
of providing information about PD to our Latino population. It provides
Spanish-language information about PD, links to Spanish-language
publications, and links to current information in Spanish.
PD Index A comprehensive directory of information about Parkinson's disease (PD) that is available throughout the Internet.
PD Plan4Life 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.
PD Trials Up-to-date
information on Parkinson's disease clinical trials currently enrolling
participants in the U.S. by symptom and location, as well as the latest
news and views on what's happening in the world of Parkinson's trials.
PForce A
group of people taking on the challenge of increasing the awareness of
PD, especially young on-set PD, as well as directly helping people
dealing with this debilitating disease.
Research! America Research! America's mission is to make medical research a much higher national priority.
Roll Call This site offers political updates of Washington, D.C. activity. It is the newspaper of Capitol Hill.
Take Charge! Cure Parkinson's, Inc. Take
Charge! Cure Parkinson's, Inc. works to increase awareness and
understanding of Parkinson's disease, raise funds for research to find
a cure and improve treatment of symptoms for quality of life, through
community programs and services.
We Move 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.
Young Onset Parkinson's Association YOPA
is comprised of Young Onset Parkinson's patients from around the
country. The mission of YOPA is to raise public awareness and to offer
support to those living with Young Onset Parkinson's disease. In
addition, YOPA will coordinate with local, regional and national
Parkinson's organizations in fundraising efforts for Parkinson's
research.
YoungParkinsons.com Another valuable link to those with Parkinson's disease and their caregivers.
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