Bringing researchers and patients in Parkinson's research together
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Tools/initiatives/resources/ideas which bring researchers and patients (and their goals) together
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Country/RegionPhaseDescription of tool/initiative/resource/ideaCategoryURL LanguageTwitterComment
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The NetherlandsEarly The Parkinson Vereniging, the Dutch Parkinson Association, has a group of 25 patient volunteers who take part in Parkinson's research projects in different phases of the research, both as an advisor as well as in performing some of the research tasks
Patient researchers
https://www.parkinson-vereniging.nl/archief/bericht/2018/03/05/Patintenparticipatie
Dutch@Parkinson_NLIn the Netherlands, patient participation in research projects is becoming more and more mainstream. The role is still mostly limited to giving advise, in stead of truly working as a practicing (patient) researcher, but it's a great start
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The NetherlandsParkinson2Beat is a patient led community raising funds and awareness for the importance of scientific researchPatient led https://www.parkinson2beat.nl/index.php/en/homepageDutch/English
@parkinson2beat
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EuropeEducation and training to increase the capacity and capability of patients to understand and contribute to medicines researchEducation https://www.eupati.eu/English
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WorldwideMomentumNew ways of evaluating research based on teamwork in achieving a common goal in stead of on individual research output
Research evaluation
https://sfdora.org/English
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Book 'Brain Power' written by patient Benjamin Stecher and Professor Alberto Espay, due summer 2019Education https://tmrwedition.com/English
@neuronologist1
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