Useful Websites

[David Hosobuchi]

Use this thread for posting other websites relevent to this forum....:)

[mbhinz]

NATIONAL VOLUNTARY PATIENT ADVOCACY GROUPS

Parkinson's Disease Foundation (http://www.pdf.org)
Ph: (800) 457-6676
Founded in 1957, PDF is a leading presence in the field of Parkinson's Disease research, education and public information. Programs include: advancing Parkinson's science through research awards and training fellowships; providing information and education to the Parkinson's community through materials and conferences; and engaging in advocacy work.

"Ask the Expert" and get an answer from the PDF physician team.
Sign up for our monthly e-bulletin for updates on scientific research and the Parkinson's community.


National Parkinson Foundation (http://www.parkinson.org)
Ph: (800) 327-4545
NPF funds scientific research and provides information, support and education for patients, their families and healthcare professionals.

Submit questions to medical experts with the "Ask the Doctor" feature.
Find a PD specialist in your area.
Features resources for finding or starting a support group.


The Parkinson ******** (http://www.parkinson********.org)
Ph: (800) 579-8440
The Parkinson ******** raises funds through local events, including the Parkinson's Unity Walk in New York City, to support scientific research programs of other PD organizations.

Review news releases and updates on recent PD research, stories and events.


The Parkinson's Institute (http://www.parkinsonsinstitute.org)
The Parkinson's Institute seeks the cause(s) to find a cure for Parkinson's disease and provides the best available medical care to patients with Parkinson's disease and related movement disorders. The Institute also investigates new and more effective diagnostic and treatment methods and works to develop prevention strategies.


INDEPENDENT REGIONAL ADVOCACY GROUPS

Dallas Area Parkinsonism Society (http://www.neighborhoodlink.com/org/daps/)
Ph: (972) 620-7600
DAPS was founded in 1978 with the focus of providing and encouraging support groups in the region.

Houston Area Parkinson Society (http://www.hapsonline.org/)
Ph: (713) 626-7114
HAPS provides numerous programs and services to both members and non-members, including free therapy groups (physical, occupational, speech, water, Tai Chi and others) for the Parkinson's community.

Maine Parkinson Society (http://www.maineparkinsonsociety.org/)
Ph: (800) 832-4116
This group was founded to build public awareness for PD, to provide support for individuals with Parkinson's disease and their families, and to provide education.

Michigan Parkinson Foundation (http://www.parkinsonsmi.org/)
Ph: (800) 852-9781
MPF was founded by people with Parkinson's disease, their family members and healthcare professionals for the purpose of education, support and research.

"The Messenger" newsletter includes information on support and research.


Northwest Parkinson's Foundation (http://www.nwpf.org/)
Ph: (877) 980-7500
A Washington State-based non-profit dedicated to community outreach and awareness within the region and to advocating for increased federal funding for research.

Find information on events and activities taking place in the Northwestern U.S.


Parkinson Association of the Carolinas (http://www.parkinsonassociation.org/)
Ph: (704) 375-0172
The Parkinson Association of the Carolinas, based in North Carolina, provides services for people with Parkinson's and their families, friends, physicians, caregivers and the general public.

Offers referral services for home health-care and caregiver resources.


Parkinson's Association of the Rockies (http://www.parkinsonrockies.org/)
Ph: (866) 718-2996
PAR focuses on education, advocacy and support services as well as addressing quality of life issues for people living with Parkinson's in the Colorado area.

Parkinson's Resource Organization (http://www.parkinsonsresource.org/)
Ph: (877) 775-4111
The Parkinson's Resource Organization has been helping families affected by Parkinson's disease since 1990.

Features upcoming events and a listing of California support groups for people with Parkinson's and their caregivers.


Parkinson's Resources of Oregon (http://www.parkinsonsresources.org/)
Ph: (800) 426-6806
PRO is dedicated to meeting the support needs of the Parkinson's community of Oregon and Southern Washington.

Includes a listing of materials and references on various PD-related topics.


Take Charge! Cure Parkinson's, Inc. (http://www.cureparkinsons.org/)
Ph: (561) 620-1970
This Florida organization works to increase awareness and understanding of Parkinson's disease, improve the quality of life for people with PD through community programs and services, and support research efforts to find a cure.


POLITICAL ADVOCACY

Coalition for the Advancement of Medical Research (CAMR) (http://www.camradvocacy.org/)
Ph: (202) 833-0355
An umbrella organization for academic, research, disease and patient organizations that supports investigative freedom in such areas as stem-cell research and somatic cell nuclear transfer.

Find advice on easy ways for individuals to contact representatives in Congress.


Grassroots Connection (http://www.grassrootsconnection.com/)
Grassroots Connection provides information and tools to assist people with their individual advocacy efforts.

Includes information on how to best influence lawmakers to pass legislation and budget funds for PD treatments and research.


Kaiser Network Daily Health Policy Report (http://www.kaisernetwork.org/daily_reports/rep_hpolicy.cfm)
News and analysis of national and state-level healthcare policy.

Read reports on the website, or subscribe to receive daily email reports.


Parkinson's Action Network (PAN) (http://www.parkinsonsaction.org/)
Ph: (800) 850-4726
PAN is the unified education and advocacy voice of the PD community.

Access the grassroots advocacy network including PAN's state coordinators, members of Congress and local media by zip code.
Find out what's happening in Congress and the executive branch on current legislation impacting the PD community.



WEB DIRECTORIES

Parkinson's Resources on the WWWeb (http://www.geocities.com/murraycharters/)
Created and maintained by PWP Murray Charters, this index is designed to increase global awareness of PD.

Topics covered range from support to news to medications, and much more.


PD Index (http://www.pdindex.org/)
The PD Index provides a directory of information about Parkinson's that is available on the Internet.

Includes references to information that is not specific to PD but which may be useful for people who live with Parkinson's.



CLINICAL TRIALS

Advancing Parkinson's Therapies (APT) Clinical Trials Website (http://www.pdtrials.org/front/)
Ph: (888) 823-8889
This website, developed specifically for people with Parkinson's, is part of the APT campaign to increase clinical trials awareness and participation.

Search for a specific clinical trial or browse a listing of Parkinson's clinical trials currently enrolling patients.


Centerwatch (http://www.centerwatch.com/)
An information service for patients, pharmaceutical and biotech companies and research centers that are involved in clinical research. Centerwatch publishes a wide range of newsletters, books and directories.

Review an extensive list of clinical trials being conducted across the world.
Subscribe to a free email service which notifies you about new Parkinson's clinical trials in your area.


National Institute of Health (http://www.clinicaltrials.gov/)
A resource site developed by the National Institutes of Health to provide patients, family members and the general public with current information about clinical research studies.

Find out about current PD clinical trials.
Access information describing the clinical trials process.


Parkinson Pipeline Project (http://www.pdpipeline.org/)
Provides information on new Parkinson's therapies currently in the pharmaceutical pipeline. (This website depends on the work of volunteers; contact the webmaster if you would like to help.)

Parkinson Study Group (PSG) (http://www.parkinson-study-group.org/)
A nonprofit, cooperative group of Parkinson's disease experts from medical centers in the U.S. and Canada dedicated to improving PD treatments through clinical trials.

Identify references in scientific and academic journals relating to PD research and clinical trials.
Find out about PSG clinical trials that are in progress.

[mbhinz]

MEDICAL INFORMATION SITES

Aetna InteliHealth (http://www.intelihealth.com/)
Learn about the latest in general health topics and Parkinson's by searching the medical dictionary.

Includes a drug resource center and an "Ask the Expert" feature.


The Complete Home Medical Guide (http://www.cumc.columbia.edu/health/index.html)
A complete guide of the services and patient resources offered by Columbia University Medical Center.

Information on healthcare providers, referrals and current research studies.


HealingWell.Com (http://www.healingwell.com/)
A comprehensive information resource for patients, caregivers and families who are coping with diseases and chronic illnesses.

Search archives to read transcripts or to view doctor-produced webcasts on PD treatments, research and more.


Medline Plus (http://www.nlm.nih.gov/medlineplus/parkinsonsdisease.html)
Medline Plus offers extensive information from the NIH and other trusted sources on over 600 diseases and conditions. The link above directs browsers to the section on Parkinson's disease.

Find hospitals and physicians.
Look up terms in a medical encyclopedia and dictionary.
Find health information in Spanish.
Review extensive information on prescription and nonprescription drugs.


Medscape (http://www.medscape.com/home)
Visit the "Parkinson's Disease Resource Center" on this website featuring a vast collection of professional medical information. Topics covered include scientific news, general information on Parkinson's disease.

Review the latest academic literature on Parkinson's research.
Check the listing of conferences to find out when new Parkinson's research findings will be presented.


Neurology Channel (http://www.neurologychannel.com/)
Developed and monitored by physicians, this site provides medical information and resources for consumers and medical professionals.

Locate your nearest neurologist through "MD Locator™".
Ask questions of physicians or participate in chat rooms in the Neurology Forum.


Parkinson's Control (http://www.parkinsonscontrol.com/)
Developed by medical experts, this site provides a full range of information about Parkinson's disease, current treatment options and latest research.

Review video programs with full-text transcripts for a fully interactive experience.


The Parkinson's Web (http://pdweb.mgh.harvard.edu/)
A comprehensive source of PD information and resources that is both personal and factual.

Search for medical centers, neurosurgical centers and caregiver support lists.


RxList (http://www.rxlist.com/)
Features a useful index of FDA-approved drugs that enables visitors to look up drug interactions and side effects.

WebMD Parkinson's Disease Condition Center (http://www.webmd.com/)
Designed to provide services that help physicians and consumers navigate the healthcare system. Click on "condition center" and select Parkinson's from the "Nervous System and Brain" category.

Read information about new treatment options for PD.
Find out about PD medications and clinical trials.



RESEARCH CONDUCTED BY PHARMACEUTICAL AND BIOTECH COMPANIES

BioSpace (http://www.biospace.com/)
Reports on biotech and pharmaceutical companies. Can be searched by company and disease indication.

MylanBertek Pharmaceuticals, Inc. (http://www.mylan.com/products/)
Features information on MylanBertek's neurology products, including a link to http://www.apokyn.com, where information can be obtained on APOKYN™, a rescue medication for Parkinson's patients.

Bristol-Myers Squibb (http://www.bms.com/landing/data/index.html)
View full prescribing information for BMS medications, Sinemet® and Sinemet® CR, as well as other product information.

GlaxoSmithKline (http://www.gsk.com/)
This site contains a total of 50 items on Parkinson's disease. The GSK drug REQUIP®, has a dedicated site http://www.requip.com/, where you can find information and background on the drug.

Medtronic (http://www.medtronic.com/)
View extensive product and patient information about ACTIVA® Therapy, the surgical technique known as deep brain stimulation (DBS).

Includes a feature that allows you to find locations where this surgery is performed.
The Medtronic website http://www.newhopeforparkinsons.com/ provides more specific information about DBS and encourages viewers to sign-up for a monthly newsletter.


Novartis (http://www.novartis.com/)
A section called "Senior Health" links viewers to information about Parkinson's and to http://www.stalevo.com/index.jsp, where detailed information can be obtained on the Novartis combination drug, STALEVO®.

Pfizer (http://www.pfizer.com/pfizer/main.jsp)
View downloadable publications such as Talking to Kids about Brain-Related Conditions and obtain prescribing information for the Pfizer drug, MIRAPEX®.

Teva Neurosciences, Inc. (http://www.parkinsonshealth.com/)
This website offers general information on Parkinson's disease, news, a glossary of PD terms, a section for caregivers and tips for living with PD.

Download the worksheet on Symptoms and Side Effects and the Efficacy and Side Effects Diary to manage medications.



SCIENCE NEWS

EurekAlert! (http://www.eurekalert.org/)
This online press service created by the American Association for the Advancement of Sciences (AAAS) provides a forum for research institutions, universities, government agencies and corporations to distribute science-related news.

View the latest science news or access the archive for easily retrievable releases from around the world.


National Institute of Neurological Disorders and Stroke (http://www.ninds.nih.gov/index.htm)
NINDS aims to lead the neuroscience community in shaping the future of research and its relationship to brain diseases. NINDS promotes collaboration throughout the scientific community and provides authoritative neuroscience research information for the general public.

Access the latest neuroscience news and review recent releases.
Review or print NINDS publications, including the Parkinson's Disease Agenda and patient fact sheets and brochures.
Access "PubMed" to review abstracts and references from more than 11 million articles, published in more than 4,000 biomedical journals since 1966.


ScienceDaily (http://www.sciencedaily.com)
Described as one of the Internet's leading online magazines and web portals devoted to science, technology and medicine. This free service brings you breaking news about the latest discoveries and hottest research projects. ScienceDaily is unique in that the magazine articles are selected from news releases submitted by leading universities and other research organizations around the world.

Search the archives for "Parkinson's" to review recent science science news from around the world.
Review a list of other science-related sites aimed at helping web surfers in their online explorations.


WE MOVE (http://www.wemove.org/)
WE MOVE is a nonprofit organization providing a comprehensive resource for movement disorder information and education - primarily for professionals but increasingly for patients and families.

Review information for patients, professionals and the public about the latest clinical advances, management and treatment options for neurologic and movement disorders.
Join the e-bulletin service to receive research news updates.



LISTSERVS

Parkinson's Information Exchange Network Online (http://www.parkinsons-information-exchange-network-online.com/)
Also known as Parkinsn list, this email discussion group and web interface is one of the largest PD online groups. The Toronto-based group shares information, advice, friendship and news on PD.

Subscribe by sending an email to: listserv@listserv.utoronto.ca, including "Subscribe PARKINSN" and your first and last name in the message.

[mbhinz]

RESOURCES AND SERVICES

AARP (http://www.aarp.org/)
The AARP is a nonprofit membership organization dedicated to improving the quality of life for people over 50 years of age.

News about Medicare and prescription drugs, as well as tips for healthy living, discounts and an email newsletter.
A search feature helps visitors find an AARP state-based chapter.


Administration on Aging (http://www.aoa.dhhs.gov/)
This multi-language website promotes healthy lifestyles by providing information on elder rights, resources, housing, nutrition and services for seniors.

Monthly news, tips and resources for caregivers.


Medicare (http://www.medicare.gov/)
This U.S. government website answers questions about Medicare and Medicaid enrolling, billing and plan choices.

Compare Medicare health services, find a plan, and locate participating physicians in your area.


The Patient Advocate Foundation (http://www.patientadvocate.org/)
The Patient Advocate Foundation is a national nonprofit organization that serves as a liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and debt crisis matters relative to their diagnosis.

Download publications on Medicare, insurance, job discrimination and more.
View a listing of "Empowering Events".



SUPPORT AND THERAPY

The LSVT® (Lee Silverman Voice Treatment) Foundation (http://www.lsvt.org/)
The LSVT® Foundation has a singular focus on improving functional communication in individuals with neurological disorders, with a specialty in Parkinson's disease. LSVT® Focuses on improving vocal loudness by exercising the muscles of the voice box and speech mechanism.

Provides details on the therapy in both personal sessions and workshop settings.
Lists locations and dates for workshops around the world.


MedicAlert (http://www.medicalert.org/home/Homegradient.aspx)
MedicAlert is a membership-based organization that works to protect and save lives by relaying identification and vital medical information in an emergency, via a 24-hour emergency response center.

Self-Help Group Sourcebook Online (http://www.mentalhelp.net/selfhelp/)
Contains a database to search specifically for PD support groups and network resources in your area, and includes information on how to start a support group.

Young Onset Parkinson's Association (http://www.yopa.org/page/page/1702945.htm)
Identify nationwide support groups by state. Access helpful tips, mind-stretching games and discussion lists that offer support to those living with young-onset Parkinson's disease.


CAREGIVER RESOURCES

CARE
Caregivers Are Really Essential is a listserv dedicated to caregivers.

Register by sending an email to: listserv@listserv.muohio.edu, including "Subscribe CARE" and your full name in the message.


Caregiver Media Group (http://www.caregiver.com/)
Ph: (954) 893-0550
Caregiver Media Group provides information, support and guidance for family and professional caregivers.

Read topic-specific newsletters and feature articles; access archived issues of Today's Caregiver magazine and a free subscription to a weekly e-bulletin.


National Family Caregivers Association (http://www.nfcacares.org/)
PH: (800) 896-3650
NFCA is a grassroots organization that was created to educate, support and empower the millions of Americans who care for chronically ill, aged or disabled loved ones of all diagnoses.

Find information and advice for caregivers, forthcoming workshops, book reviews, reading lists, "how-to" guides, tips and market research reports.


Parkinson's Training for Caregivers (http://www.parkinsonseducator.com/)
The Parkinson's Training for Caregivers project is a free online course developed to train caregivers for those with Parkinson's disease in long-term care settings. This online training course was developed with funds from the Northwest Parkinson's Foundation and the U.S. Department of Health and Human Services, Administration on Aging.

Use this educational tool to learn about aspects of being a caregiver as well as to learn about the disease itself.
Take advantage of helpful features including video samples and tips for medication management.

[mbhinz]

Where do I find:

A neurologist in my area?
http://www.neurologychannel.com/


A PD listserv?
http://www.parkinsons-information-exchange-network-online.com/


A website where I can ask a question and receive an answer from a medical expert?
http://www.pdf.org/


A website where I can find the latest academic literature on Parkinson's disease?
http://www.medscape.com/home


Web resources for caregivers?
http://www.nfcacares.org/


Information on current Parkinson's clinical trials?
http://www.pdtrials.org/front/
http://www.clinicaltrials.gov/


Information on advocacy efforts?
http://www.parkinsonsaction.org/


Updates on the latest news in science?
http://www.ninds.nih.gov/index.htm
http://www.sciencedaily.com/

[CarolynS]

http://www.tellmeaboutstemcells.org/index.php

[vlhperry]

Here is another site with information about the Stem cell debate and a description of what Stem cells really are:

http://www.lifenews.com/bio1835.html

[EdwardAdams]

My Parkinson's Info (http://www.myparkinsonsinfo.com) is becoming a pretty good resource- It usually contains blog postings by Parkinson's patients, Parkinson's doctors, and Parkinson's caregivers.

[CarolynS]

There is tons of information about clinical trials at your fingertips, developed by PWPs with the PD community in mind:

Facts About Clinical Trials (http://www.pdpipeline.org/clinicaltrials/factsabout.htm): answers to 12 basic questions

Recruitment and Retention (http://www.pdpipeline.org/clinicaltrials/recruitretention.htm):

Clinical Trial Facts
Recruitment and Retention of Clinical Trial Participants
More effective recruitment can stem rising costs
Advocates positively impact clinical trials
Involving participants improves retention

Risks and Benefits Tradeoffs (http://www.pdpipeline.org/clinicaltrials/calcrisks.htm)

Medical Progress Requires Calculated Risks
Risks and benefits vary with trial type, phase
FDA: Managing risks of clinical trials
Securing approval for public use of new treatment

Informed Consent and Participants’ Safety (http://www.pdpipeline.org/clinicaltrials/informedconsent.htm)

Who/What Ensures Clinical Trial Participants’ Safety?
Investigational New Drug Application (IND)
Institutional Review Boards (IRBs) approve protocol
Informed consent process

To Participate or Not to Participate in Clinical Trials
(http://www.pdpipeline.org/clinicaltrials/considerjoining.htm)

Placebo Effect in Parkinson’s Disease (http://www.pdpipeline.org/ethics/placebo.htm)


Outsourcing Clinical Trials Gaining Popularity (http://www.pdpipeline.org/ethics/outsourcngtrials.htm)

Better Reporting of Clinical Trial Results Will Speed Development of New Trials,
Enhance Safety of Research Participants, and Promote Practice of Evidence-Based Medicine (http://www.pdpipeline.org/ethics/betterreportingresults.htm)
and TONS more information...check it all out! Consider getting involved.

[relewis424]

I just wanted to share this site, www.thecaringspace.com
It really helped my family when we were looking for assistance for my mother who has suffered from parkinson's throughout the last decade. Right now, families sign up for free, so we had unlimited access to their entire network of caregivers, as well as the ability to arrange interviews through their free conference call service. We thought this site was a great resource and we just wanted to pass it along because it could definitely benefit other families as well. Good luck!

[Joe O'Rourke]

Parkinson's Disease News : http://www.viartis.net/parkinsons.disease/news.htm

[Deep Brain Diarist]

Just an invitation, if I may, for my fellow parkies to drop by and have a look at my blog. I write about the day-to-day struggle as a guy who has been diagnosed since 2000 and who had Deep Brain Stimulation surgery in 2007. Come on in, have a look around, leave a comment.

http://deepbraindiary.com/category/parkinsons/