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PD Information & care
Disclaimer
Links to third-party sites does not imply an endorsement by the EPDA. Please read our full terms of use of the EPDA site for more information.
www.opprecht-foundation.org
The Annemarie Opprecht-Foundation was established in 1998 and sponsored by Annemarie Opprecht, a Swiss philantropist. The specific aim of the Foundation is to promote medical, or medical related research in the field of Parkinson's disease on an international level.
The Foundation presents, at regular intervals, the Annemarie Opprecht Parkinson Award. Awarded every 3 to 6 years, the prize varies between 50,000 and 100,000 Swiss francs. Considered are papers presenting significant results or findings in all areas of research in the field of Parkinson's disease (e.g. Basic Sciences, Epidemiology, Treatment, Social impact, Economical aspects).
www.ensinfo.com
The European Neurological Society (ENS) was launched in 1986. Today the ENS has a membership of about 2300 individual neurologists from 60 countries worldwide. Members can be found among clinicians and scientists whose interest is directed towards practice, teaching or research in neurology and cognate fields.
The official journal of the society is The Journal of Neurology which is published by Steinkopff Verlag, Germany.
www.guide4living.com/parkinsons
Launched in July 2005, the Guide4Living website provides provides independent information on various health issues such as Alzeihmer's Disease, Breast Cancer and Multiple Sclerosis. The site has a section dedicated to Parkinson's disease.
The focus of the site is on raising issues and features a forum for users to both air their views as well as share their thoughts. A personal stories section provides sufferers a place to share their experiences and offer comfort to others that they are in the same situation.
www.life-in-motion.org
The Life in Motion Resource Center is part of a nationwide awareness campaign organised by WE MOVE that includes downloadable patient education brochures and information on movement disorders.
The Web site also includes information on the Life in Motion campaign, Life in Motion coalition members, an online press room, a glossary of terms, as well as links to the WE MOVE Web site, www.wemove.org.
www.cureparkinsons.org.uk
Movers & Shakers is committed to driving momentum towards a cure through high-impact profile-raising initiatives and by generating funds for the Cure Parkinson’s trust
The Cure Parkinson's Trust has been set up to hold and, when appropriate, to distribute funds on behalf of the Movers and Shakers who raise them.
www.nice.org.uk
NICE produces guidance in three areas of health:
- public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
- health technologies - guidance on the use of new and existing medicines, treatments and procedures within the NHS
- clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS.
NICE guidance is developed using the expertise of the NHS and the wider healthcare community including NHS staff, healthcare professionals, patients and carers, industry and the academic world.
The NICE clinical guideline on Parkinson's disease covers:
- the diagnosis of Parkinson's disease and checking the diagnosis regularly
- the way people with Parkinson's disease should receive information
- the medicines that can be used
- other ways of helping with symptoms
- how to care for people whose mental health is affected
- the care people with Parkinson's disease should receive at the end of their life.
www.oxfordfunctionalneurosurgery.org.uk
Oxford Functional Neurosurgery is dedicated to the surgical alleviation of movement disorders such as Parkinson’s disease, dystonia, tremor and neuropathic pain syndromes such as phantom limb pain, anaesthesia dolorosa and post stroke pain. The service offers deep brain stimulation or lesional procedures as appropriate.
Oxford Functional Neurosurgery has it’s origins in 1993 when Professor Aziz initiated functional surgery for movement disorders in Oxford. At that time Oxford was virtually the only UK centre with such a service.
www.parkinsonian.com
Patient website aimed at Young Parkinsonians, Yoppers and post and pre DBS/STN Patients.
The site has been created by a Parkinson's sufferer of over 10 years who has undergone DBS. The site offers personal advice and perspectives on the condition and his experiences.
Also from the same author: www.epstitch.com.
www.parkinsonshealth.com
Parkinson's Health is directed at those diagnosed with Parkinson's disease or who think they may have the disease, and to the caregivers who treat the individuals. Whilst the site is intended for US residents only, much of the information presented is wholly appropriate and relevant to anyone searching for information, comfort or connection with sufferers and cares alike.
In this site, you'll find:
- Information on PD Symptoms, including an Animation describing the progression of PD and how to tell if your symptoms are related to PD or something else.
- Tips and advice for Living with PD and developing a game plan to help take control of your symptoms and your life.
- Interactive tools to help you track your symptoms and side effects, and view your personal progress.
- Answers to your questions about PD,
- and a Glossary to explain terms you aren't familiar with.
www.parkinson-italia.info
The Parkinson-Italia.info website is dedicated to the Italian Parkinson environment. The site stands out in that it features an e_gym resource that provides easy to follow animated instruction of basic physiotherapy exercises.
Currently the resource is availble in the following six language versions on-line:
http://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. 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.
www.pdpals.com
PALS Support Group offers support to those of a younger age who have Parkinson's Disease.
PALS Support Group has formally existed since November, 1998 and is a branch of the Parkinson's Association of Ireland. It is the brainchild of its Chairman, David Magennis, who has had PD since he was 28.
www.pdmed.bham.ac.uk
PD MED: A Phase III Parkinson's Disease Trial
Birmingham Clinical Trials Unit (BCTU)
The PD MED Study is a large, simple, "real-life" trial that aims to determine much more reliably which class of drugs provides the most effective control, with the fewest side-effects, for both early and later PD.
Patients with early PD are randomised between DA, MAOBI and LD alone, with the option to omit either the MAOBI or LD alone arm. Those with later PD are randomised between COMTI, DA and MAOBI, with the option to omit either the DA or the MAOBI arm. The main outcome measure is patient-rated quality of life, using the PDQ-39 scale, which assesses all aspects of the patient’s life, and is sensitive to changes considered important to patients but not identified by clinical ratings.
The study is funded by a grant from the NHS Health Technology Assessment Programme and is supported by the European Parkinson's Disease Association (EPDA), the Parkinson's Disease Society (PDS) and the Parkinson's Disease Nurse Specialist Association (PDNS)
pdnsa.net
The PDNSA (Parkinson's Disease Nurse Specialist Association) was formed in 1999. It acts as a national resource and network for nurses to share knowledge, expertise and best practice about Parkinson's Disease and its management.
The Association also has a vital role to play in influencing policy and practice both nationally and internationally. It has links with a variety of other organisations such as the Joint Committee of Professional Nursing, Midwifery and Health Visiting Associations (JCPNMVHA), the International Steering Committee of Movement Disorder Nursing Societies and Neuroalliance. These links provide a forum for the discussion of professional issues where appropriate action can be taken to influence the development of nursing practice.
The most important role of the PDNSA is that it represents a body of Parkinson's Disease Nurse Specialists and as such has the power to influence change.
www.remedyfind.com/HC-Parkinsons-Disease.asp
RemedyFind provides information on a range of different treatments for specific health conditions including Parkinson's disease and allows individuals to rate the effectiveness of treatments that include pharmaceutical medications to herbs and vitamins and alternative therapies.
The idea is that by pooling together users' experiences with different health remedies this information would help others become more aware of potential treatment and relate to their own.
www.rescueproject.org
The 3 year Rescue project, funded by the European Commission (2002-2005), investigated cueing as a rehabilitation strategy in Parkinson's disease. Details about the researchers and the published outputs of the team are available on the project's website. The website also provides background on the principles of cueing and information on cueing for people with Parkinson's disease and their carers: www.rescueproject.org/pubs/info_sheets.htm
A CD-Rom for therapists, outlining the cueing therapy programme used in the successful Rescue randomised clinical trial, is available: www.rescueproject.org/pubs/cd-rom.htm
www.pdupdate.org
This website contains updates and new information regarding the Self-Care Manual and the CD-ROM on Parkinson's Disease. The contents of these products is being updated on a regular basis by numerous PD experts, and this process is co-ordinated by the Parkinson's Disease Society of the United Kingdom and the September Foundation, Amsterdam. By means of this service you can keep your information up-to-date, free of charge.
http://sda.uk.net
The Sexual Dysfunction Association is a charitable organisation which was set up to help sufferers of impotence (erectile dysfunction) and their partners and to raise awareness of the condition amongst both the public and the medical profession.
www.wemove.org/par
WE MOVE is an Internet based resource for movement disorder information and education. Since 1991, this not-for-profit organization has been educating and informing patients, professionals and the public about the latest clinical advances, management and treatment options for neurologic movement disorders.
http://yap-web.net
Formally Yapp&rs (pronounced YAPPERS), the Younger Parkinson's Network (YPN) is the Parkinson's Disease Society special interest group for younger people of working age and their families. Local groups are situated across the UK and provide younger people with mutual support. A conference is held every two years, and a magazine called the YAPmag is published four times a year.
www.yopa.org
People With Parkinson's, especially young onset, may wish to visit this site, at the invitation of Thomas Berdine, President Young Onset Parkinson's Association (YOPA) to plot their location on their world guest map.
The mission of the Young Onset Parkinson's Association (YOPA) is to educate the American public and politicians on issues relating to Parkinson's disease, specifically those issues associated with the unique cases of young onset patients.
The Young Onset Parkinson's Association strives to provide education and awareness on the subject of young onset Parkinson's disease worldwide. They help to promote all current, positive legislation and assist in the lobbying efforts to counter opposing opinions.
www.youngparkinsons.com
Thomas Berdine is the founder of YoungParkinsons.com, a New Mexico State Representative for the Parkinson's Action Network, and the President of the Young Onset Parkinson's Association (YOPA). He was medically retired from the US Air Force after a 16 year career in October of 2001 due to the effects of Parkinson's disease. He was officially diagnosed in March of 2001. He now dedicates the majority of his time to Parkinson's advocacy.
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