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Web Resources for People with Parkinson's - Part One
The worldwide web means different things to different users. For organizations, it is a means of disseminating information and of promoting goods and services. For individuals, it has become both a productivity tool, saving time and money in finding out about the world, and a way of staying in touch not just with those close to home but with different communities across time and geographical boundaries.
The vast quantity of material available to web-browsers spans a wide spectrum of style and content, from the inspiring personal journal of an individual to the scientific rigor and authority of well-known medical institutions. Whether you need to locate a neurologist, to update yourself on recent research, to read about current clinical trials or to meet new friends within a 'virtual community': the web has it all.
PDF News & Review asked the Parkinson's community to tell us which websites and resources they frequently use and find valuable. Here, we provide readers with an overview of these cyberspace successes in Part I of a two-part series. Watch out for PDF News & Review Summer 2003 issue for a review of web resources for clinical trials; pharmaceutical companies; scientific news; political advocacy groups and much more!
| National Voluntary Patient Advocacy Groups | ||
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The websites listed below are voluntary not-for-profit organizations that support and serve the Parkinson's community. In addition to providing PD-related news and forthcoming events and activities, many sites offer special features, which are indicated below. | ||
| American Parkinson Disease Association | ||
| www.apdaparkinson.com | ||
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Ph: (800) 223-2732 Founded in 1961, the APDA has the following mission: "Ease the Burden and Find the Cure" for Parkinson's disease. They do this through research, patient and family support and education.
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| "James", a site about Parkinson's disease | ||
| james.parkinsons.org.uk | ||
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A UK site with international content, containing PD information and other website links and general medical information.
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| Michael J. Fox Foundation for Parkinson's Research | ||
| www.michaeljfox.org | ||
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Ph: (212) 509-0995 The Michael J. Fox Foundation for Parkinson's Research works to help develop a cure for Parkinson's disease by providing grants that help guarantee that new and innovative research avenues are thoroughly funded and explored.
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| National Parkinson's Foundation | ||
| www.parkinson.org | ||
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Ph: (800) 327-4545 NPF funds scientific research and educates medical professionals and the general public to improve awareness of Parkinson's disease.
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| Northwest Parkinson's Foundation | ||
| www.nwpf.org | ||
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Ph: (877) 980-7500 A Washington State-based nonprofit that is dedicated to community outreach and awareness within the region and also to advocacy to government for increased funding for research. The NWPF also raises money to help fund a unique multi-disciplinary care center, staffed by a team of movement disorder specialists.
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| The Parkinson Alliance | ||
| www.parkinsonalliance.net | ||
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Ph: (800) 579-8440 The Parkinson Alliance raises funds through local events, including the Parkinson's Unity Walk in New York City to support scientific research programs of other PD organizations.
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| Parkinson's Disease Foundation | ||
| www.pdf.org | ||
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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.
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| People Living with Parkinson's | ||
| www.plwp.org | ||
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PLWP aims to improve the quality of life of people living with Parkinson's by encouraging information sharing, mutual support and friendship within the Parkinson's community.
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| Caregivers | ||
| Caregiver.com | ||
| www.caregiver.com | ||
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Ph: (954) 893 0550 Caregiver Media Group provides information, support and guidance for family and professional caregivers.
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| CARE | ||
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Caregivers Really Are Essential is a listserv dedicated to caregivers.
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| National Family Caregivers Association | ||
| www.nfcacares.org | ||
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Tel: (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.
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| Listserv for PD community | ||
| www.braintalk.org | ||
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Described as the world's largest online neurological patient support group, these forums are owned and maintained by the Department of Neurology at Massachusetts General Hospital. Three specific forums are listed for Parkinson's disease. In addition, a search function allows users to review archived topics. | ||
| Parkinson Information Exchange Network | ||
| www.parkinsons-information-exchange-network-online.com | ||
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Also known as Parkinsn list, this email discussion group and web interface is one of the largest PD online groups with over 2,000 members worldwide. The Toronto-centered group shares information, advice, friendship and news on PD. The web interface also lists 300 of the most recent messages.
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| Parkinson's Friends | ||
| www.parkinsonsfriends.net | ||
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PD list serve that members describe as the place to visit to be serious or fun, make friends or visit when you can't sleep. | ||
| Medical Information Sites | ||
| Where do I find: | ||
| Healing Well. Com | ||
| www.healingwell.com | ||
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A comprehensive information resource for patients, caregivers and families who are coping with diseases and chronic illnesses.
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| MEDLINEplus | ||
| www.nlm.nih.gov/medlineplus/parkinsonsdisease.html | ||
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MEDLINEplus offers extensive information from the National Institutes of Health and other trusted sources on over 600 diseases and conditions. The above link directs browsers to the section on Parkinson's disease.
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| Neurology Channel | ||
| www.neurologychannel.com | ||
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Developed and monitored by physicians, this site provides medical information and resources for consumers and medical professionals.
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| Parkinson's Control | ||
| www.parkinsonscontrol.com | ||
Developed by medical experts, this site provides a full range of information about Parkinson's disease, current treatment options and the latest research.
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| WebMD Parkinson's Disease Condition Center | ||
| www.webmd.com | ||
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Ph: (201) 703-3400 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.
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| Younger audiences | ||
| Young Onset Parkinson's Association | ||
| www.yopa.org | ||
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Ph: (505) 293-5612 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. | ||
| PD Kids | ||
| www.coles.org.uk/Current_Projects/Lists/pdkids.htm | ||
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An e-forum for kids in families with PD that gives them opportunities for support and sharing. | ||
| Quick Reference | ||
| Where do I find: | ||
| A neurologist near my home? | ||
| www.neurologychannel.com | ||
| A PD listserv? | ||
| www.parkinsons-information-exchange-network-online.com | ||
| A website where I can ask a question and receive an answer from a medical expert? | ||
| www.pdf.org | ||
| A site that is reviewed and monitored by medical professionals? | ||
| www.neurologychannel.com | ||
| Web resources are there on the web for caregivers? | ||
| www.nfcacares.org | ||
Happy Surfing!
