PARKINSON'S ORGANIZATIONS AT HOME AND AROUND THE WORLD
If you would like to see your organization listed here or report changes, please send the link or updates to links@southeasternpd.com.
"Knowledge is power."SARASOTA, FLORIDA USA Neuro Challenge Foundation, Inc. www.neurochallenge.org Clearinghouse for research, healthcare and lifestyle advice. Therapeutic communication tool for Parkinson patients and their families. Join the Challenge by engaging in special interest forums, support groups and more. Negroski, Sutherland & Hanes Neurology www.myfloridaneuro.com Board-certified neurologists with more than fifty years of cumulative experience in the diagnosis and treatment of neurological disorders including Parkinson Disease, Multiple Sclerosis, Stroke and more, ensuring that the care you receive will be state of the art and designed with you in mind. Sarasota Memorial Health Care System www.smh.com Local hospital featuring a certified stroke center. Voted one of “America’s Best Hospitals – by US News & World Report. HealthFIT www.smhfit.com Information about the state-of-the art medically-oriented fitness center located just downstairs from the Southeastern Center. NATIONAL ORGANIZATIONS The Michael J. Fox Foundation for Parkinson's Research www.michaeljfox.org National information and research on Parkinson Disease. The Michael J. Fox Foundation for Parkinson's Research is dedicated to spending funds it raises for research in a way that will best deliver on the Foundation's mission: to secure truly effective treatments and a cure of Parkinson's on the fastest track possible, at least within the decade. Church Street Station P.O. Box 780 New York, NY 10008-0780 T: 800-708-7644 or 212-509-0995 F: 212-213-3523 Parkinson's Disease Foundation www.pdf.org The Parkinson's Disease Foundation (PDF) is a leading national presence in Parkinson's disease research, patient education and public advocacy. 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. Since its founding in 1957, PDF has funded more than $50 million worth of scientific research in Parkinson's disease, supporting the work of leading scientists throughout the world. 1359 Broadway Suite 1509 New York, NY 10018 T: 800-457-6676 or 212-923-4700 F: 212-923-4778 Email: info@pdf.org National Parkinson Foundation, Inc. www.parkinson.org National Parkinson Foundation seeks to help find the cause and the cure for Parkinson's disease and related neurodegenerative disorders. The NPF helps educate patients, caregivers, and the general public as well as provides some diagnostic and therapeutic services. 1501 N.W. 9th Avenue Miami, FL 33136 T: 800-327-4545 F: 305-243-4403 Email: mailbox@npf.med.miami.edu McKnight Brain Institute of the University of Florida www.mbi.ufl.edu/research The Parkinson's Action Network www.parkinsonsaction.org The Parkinson's Action Network is the unified voice of the Parkinson’s disease community, advocating for more than one million Americans and their families. WE MOVE www.wemove.org Worldwide Education and Awareness for Movement Disorders is a non-profit organization whose primary mission is to increase awareness of movement disorders among healthcare professionals and the public. The site provides information on movement disorders and treatment options. MORE WAYS TO CONNECT The Parkinson’s Web www.pdweb.mgh.harvard.edu Provides links to PD organizations, treatment, and research centers. The Parkinson's Disease Information Exchange Network Online www.parkinsons-information-exchange-network-online.com Provides a searchable database of online articles and links to other online resources. American Parkinson Disease Association, Inc www.apdaparkinson.org Provides information on PD and on the APDA’s services and activities. Provides listings of APDA Information and Referral Centers throughout the US, as well as available literature. PD Blogger www.pdblogger.com PDBlogger is an English and Spanish information website. PD Plan4Life www.pdplan4life.com 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. 23 and Me www.23andme.com Genetic information source. NEWS SOURCES Medical News Today www.medicalnewstoday.com Searchable information for Parkinson patients and caregivers. MORE SOURCES Life in Motion www.life-in-motion.org Information about movement disorders for children and adults. Clognition www.clognition.org Addresses the motor symptoms that tend to do the most harm to quality of life. Parkinson Pipeline Project www.pdpipeline.org 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 www.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." CAREGIVER INFORMATION National Family Caregivers Association www.nfcacares.org This is a grass roots organization created to educate and support the millions of Americans who care for chronically ill loved ones. Family Caregiving Alliance www.caregiver.org A non-profit organization providing general information on caregiving and links to community services and support. FOR THE CHILDREN PDKIDS www.coles.org.uk/pdkids.htm Site for kids living with parents who have Parkinson's, established by the APDA Young Parkinson's Information and Referral Center in partnership with the Adrienne Coles Memorial Trust. Kids Health Good site to explain Parkinson Disease to kids. www.kidshealth.org/kid/grownup/conditions/parkinson.html FIND OUT MORE ABOUT PD Web MD www.webmd.com eMedicine from WebMD Clinical reference guide. www.emedicine.com/neuro/topic635.htm Medscape www.medscape.com/px/urlinfo Provides scientific abstracts and links for health-related questions. Medline www.nlm.nih.gov/medlineplus A search service sponsored by the National Institutes of Health and the U.S. National Library of Medicine. Online Medical Dictionary www.cancerweb.ncl.ac.uk/omd Useful for definitions of medical terminology. Medical Matrix www.medmatrix.org Updated clinical medicine resources. BMJ Publishing Group Physician’s site. Great for doing article searches. www.bmj.com RightHealth www.righthealth.com Uniquely searchable medical information. National Institute of Health www.nih.gov Health information, grants and funding opportunities, news, events, and scientific resources. National Library of Medicine (Pubmed) www.ncbi.nlm.nih.gov/pubmed/ Neurosciences on the Internet www.neuroguide.com Provides general information on brain related topics, including grants and funding opportunities, and links to other scientific resources. National Institute of Neurological Disorders and Stroke www.ninds.nih.gov Provides information on neurological disorders and research. National Institute of Neurological Disorders and Stroke www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm Searchable research information on Parkinson disease and stroke. National Institute of Neurological Disorders and Stroke www.ninds.nih.gov/funding/research/parkinsonsweb/research_agenda.htm 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. Centers for Disease Control and Prevention www.cdc.gov LEARN ABOUT YOUR MEDICATIONS AND GET HELP TO PAY FOR THEM RatioPharm www.ratiopharm.ca/english Written by Canadian pharmacists for consumers. Pharmaceutical Research and Medications of America www.phrma.org Provides information on medicines, including a Directory of Prescription Drug Patient Assistance. RxHope www.rxhope.com Supported by Pharmaceutical and Research Manufacturers of America. Provides more information on prescription drug assistance. DEEP BRAIN STIMULATION Medtronic, Inc www.medtronic.com Medtronic is the medical technology company that manufactures DBS implant. Provides information and research provided on how the device works and what it is useful for. OTHER PLACES TO LEARN American Association of Retired Persons (AARP) www.aarp.org Provides health information for senior citizens, and links to community resources and services. Medicare Information www.medicare.gov Provides searchable information on the basics of the Medicare program and its coverage. Roll Call www.rollcall.com Political updates. It’s the newspaper of Capitol Hill. Benefits for People with Disabilities www.ssa.gov/disability 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. GovBenefits.gov www.govbenefits.gov The official government benefits website, this free, easy to use and confidential site helps you find the government benefits you may be eligible to receive. Congress.org www.congress.org Congress.org is a joint venture of two Washington, D.C. area firms with expertise in communicating with Congress. The Dana Alliance / The Dana Foundation www.dana.org/about Living alone with Parkinson’s Disease www.livingalonewithparkinsons.com Anecdotal observations from a patient who has lived alone with PD for 20 years. AMA Guidelines for Health Information on the Internet www.ama-assn.org/ama/pub/category/1905.html Health Finder www.healthfinder.gov Sponsored by the U.S. Dept. of Health and Human Services. Sympatico/MSN www.healthandfitness.sympatico.msn.ca/Home/Home Health and Fitness Information with streaming video. Healing Well www.healingwell.com Searchable information for patients and families. Motivating Moves for People With Parkinson's www.pdf.org/Publications/motivating_moves.cfm 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. |
"Information is liberating."LOCAL CLINICAL TRIAL POSTINGS Clinicians at the Southeastern Center for Parkinson Disease and its partners are actively involved in the discovery of new and better avenues to improve patient wellness. Here are just a few of our most recent clinical trials: Interferon beta-1a vs. Interferon beta-1b: observation of efficacy, Berlex. Avonex Combination Trial. (ACT)/C-865, Biogen. Adagio Trial. (Rasagaline for Parkinson Disease),Teva. Ono Trial. (Acute Stroke treatment) CLINICAL TRIAL SEARCH ENGINES Explore the links below for additional information on cutting edge research. Speak with your physician about trials that might be right for you. Center Watch www.centerwatch.com Lists industry and government funded clinical trials across the US. Provides basic information on how clinical research is conducted. Mayo Clinic www.mayoclinic.com Nationally recognized PD research group. Provides information on current research and clinical trials. National Institutes of Health www.ClinicalTrials.gov Provides listing of Parkinson's disease clinical research studies and contact information. This site also provides information on the clinical trial process. PDtrials.org www.PDTrials.org Acts as a comprehensive resource for finding and understanding clinical trials in PD. PAIN, HOSPICE, PALLIATIVE CARE Beth Israel Medical Center Department of Pain Medicine and Palliative Care www.stoppain.org Provides educational materials, bibliographies, research tools, email discussion groups, courses, conferences, clinical trial information, and support groups. The National Hospice and Palliative Care Association www.nhpco.org/templates/1/homepage.cfm The National Hospice and Palliative Care Organization is the oldest and largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones. Tidewell Hospice and Palliative Care (Sarasota, Florida) www.tidewell.org Sarasota, Florida website. National Respite Coalition www.chtop.org/ARCH/ARCH-National-Respite-Coalition.html 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 www.chtop.org/ARCH/National-Respite-Locator.html 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. EARLY ONSET PARKINSON DISEASE Young Onset Parkinson's Association www.yopa.org 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. National Young Onset Center www.youngparkinsons.com Provides information for young-onset Parkinson patients. "James", a site about Parkinson's disease www.james.parkinsons.org.uk Provides information on PD, links to other online resources, and a directory of PD e-mail mailing lists. Young Parkinson's www.youngparkinsons.org More information for patients with young onset Parkinson Disease. INTERNATIONAL World Parkinson Disease Association www.wpda.org Provides a weekly updated listing of worldwide PD research and news. Parkinson Society Canada www.parkinson.ca Parkinson's Australia, Inc. www.parkinsons.org.au The Parkinsons Association of Western Australia http://www.parkinsonswa.org.au/ Parkinsons New South Wales Inc. www.parkinsonsnsw.org.au Parkinson's Australia, Inc. Contact: c/o Parkinson's NSW, Inc. Concord RG Hospital, Bldg. 64, Hospital Rd. Concord NSW 2139 Australia Parkinson's Victoria Inc. www.parkinsons-vic.org.au Europark - Asociacion Europea Pacientes www.sarenet.es/parkinson/ Parkinson Selbsthilfeverein Oberosterreich Contact: Reinhard Hinterleitner Bindergraben 4 Katsdorf 4223 Austria T:: 43 7235-82-84 Belgische Parkinson Vereniging Contact: Monique de Plaen J. Stobbaertslaan 43 Bruxelles 1030 Belgium T: 32 2245-59-45 Associaçäo Brasil Parkinson www.parkinson.org.br Parkinson's Disease Society Ruska 69 Prague 10 10000 Czech Republic T: 42 274-42-38 Dansk Parkinsonforening www.parkinson.dk Contact: Joyce Schmidt Bomlaerkevej 12 Horsholm 2970 Denmark T: 45 4286-72-09 F: 45 4286-91-09 Danish Motion Disorder Society www.danmodis.dk www.danmodis.dk/parkinso.htm Faroe Islands Foroya Parkinsonfelagid Contact: Tordur Mikkelsen Varagota 9 Faeroer Faeroes Finlands Parkinsonforbund www.parkinson.fi Contact: Brita Nyborn Suomen Parkinson-litto, PB 905 Turku 20101 Finland T: (358) 2-2740-400 F: (358) 2-2740-444 Email: Brita.Nyborn@parkinson.fi Fédération Française des Groupements de Parkinsoniens T Président : 01 47 49 37 42 T Siège : 01 30 53 20 29 Contact: Marcel Besnard 3 Chemin du Grand Fosse St. Nazaire 44600 T: 33 4022-00-84 Association France Parkinson T : 01 45 20 22 20 Contact: Alain Honorat 37 bis rue la Fontaine Paris 75016 T: 33 145-202-220 F: 33 140-501-644 Deutsche Parkinson Vereinigung Bundesverband e.V. Contact: Friedrich Mehrhoff Moselstrasse 31 Neuss 41464 T: 49 213-141-016/7 F: 49 213-145-445 Parkinsonsamtokin a Islandi Contact: Aslaug Sigurbjornsdottir Grandavegi 47 Reykjavik 107 T: 354 127-417 Parkinson Disease Foundation of India www.parkinsonsdiseaseindia.com/index1.htm Parkinson's Disease Surgery www.parkinsonindia.org Associazioni Italiana Parkinsoniani www.parkinson.it/aip Contact: Marzio Piccinini Via Zuretti 35 Milano 20125 T: 39 266 671 31111 F: 39 267 05283 Email: aip@parkinson.it Azione Parkinson Contact: Antonella Morini Via Quintino Majorana, 149 Roma I-00152 T: 39 65-599-200 F: 39 65-599-200 Association Luxembourgeoise de la Maladie de Parkinson Contact: Junker Jean 169 Avenue de la Liberation Schifflange 3850 T: 352 546-221 BP 1348 L-1013 T: 352 54 62 21 Parkinson Patienten Vereniging www.parkinson-vereniging.nl Postbus 46 3980 CA Bunnik T: 030-6 56 13 69 E-Mail: info@parkinson-vereniging.nl Netherlands www.timpani.nl Norges Parkinsonforbund www.parkinson.no Contact: Frank Marring Schweigaardsgt. 34, bygg F, oppg. 2 Oslo 0191 T: 47 22-175-861 F: 47 22-175-862 Regional Parkinson's Disease Patients Association in Warsaw Jodkowa 22/102-907 T: 48 22 22 42 1331 Cracow Parkinson's Disease Association Dr Anna Krygowska-Wajs Klinika Neurologiiul Botaniczna 331-503 T: 48 12 61 88687 F: 48 12 42 14069 Parkinson's Disease Scottish Resource 10 Claremount Terrace, Glasgow G3 7XR T: 0141 332 3343 Parkinson's Disease Association of Slovenia Contact: c/o Dr. Zvezdan Pirtosek Institute of Clinical Neurophysiology, University Medical Centre Ljubljana 1525 T: 38 661-316-152 F: 38 661-302-771 Parkinson Association South Africa www.parkinsons.co.za Parkinson Espana Contact: Maria Jose Ruiz C/ de la Torre, 14 bajos Barcelona 08006 T: 34 34-160-320 F: 34 34-161-060 Parkinson’s en Espanol www.sarenet.es/parkinson Svenska Parkinsonförbundet www.parkinsonforbundet.se Nybrokajen 7, 111 48 Stockholm T: 08-611 93 31 e-mail: ordf.sto@swipnet.se Svenska Parkinsonstiftelsen Contact: Filip Garstam Karlagatan 23 Goteborg 41661 T: 46 31-193-020 F: 46 31-190-245 Svenska Parkinsonstiftelsen www.communique.se/parkins Schweizerische Parkinsonvereinigung www.parkinson.ch gewerbestrasse 12a postfach 123 8132 egg T: 01 984 01 69 F: 01 984 03 93 e-mail: info@parkinson.ch Parkinsons Disease Society of the United Kingdom www.parkinsons.org.uk |