Links for further reading and research:
Resources
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European resources and links
European Multiple Sclerosis Platform - Dropping the Mask, two inspiring advocacy videos
European Patients' Academy on Therapeutic Innovation (EUPATI) - Patient Toolbox
European Patients' Academy on Therapeutic Innovation (EUPATI) - webinar "Strengthening Patient Involvement in Health Technology Assessment" (video and presentation slides)
European Patients' Academy on Therapeutic Innovation (EUPATI) - webinar "Interaction between Patients and other Stakeholders" (screencast and presentation slides)
European Patients' Academy on Therapeutic Innovation (EUPATI) - Analysing Clinical Trial Results
International Alliance of Patients’ Organisations (IAPO) report on consensus framework for ethical collaboration between patient organisations, healthcare professionals and the pharmaceutical industry
Cochrane German blog
EURORDIS Patients' Priorities and Needs for Rare Disease Research 2014 - 2020 position paper
Global Genes: How to promote your rare disease story through social media
Patienten Bibliothek - German resources for patients, patient organisations, healthcare professionals, sport associations, hospitals and clinics and health authorities
Lost and Found with RMDs - Patient stories from Slovakia
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Resources and links in Dutch
PGO Support website (Dutch national umbrella organisation for patients organisations, which proves information and training)
Patiëntenfederatie NPCF
Mental health care in the Netherlands - https://www.zorgwijzer.nl/faq/ggz
De Inspectie voor de Gezondheidszorg (IGZ)
De Nederlandse Zorgautoriteit (NZa)
PGO Support training - patiëntenperspectief bij richtlijnontwikkeling
ZonMw Medische Inspirator article and video
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Resources and links in English
The Patient Research Ambassador Initiative of the National Institute for Health Research (NIHR)
European Medicines Agency (EMA) video about patient representatives in the medicines approval and review process
The University of Manchester - a medical school first for patient & public involvement, thanks to donation
Canadian Foundation for Healthcare Improvement - Patient Engagement Resource Hub
Global Genes - a catalogue of toolkits for the Rare Diseases community
COPD blog from Ireland - Taking a Breath: https://thesilvervoice.wordpress.com/2016/02/07/taking-a-breath/
Research Involvement and Engagement artice: The patient voice in research - evolution of a role
Canadian blog: When patient advocates are better than doctors
The Cochrane Task Exchange - a platform that connects people who need help with their Cochrane reviews with people who have the time and expertise to help
ESMO 2016: My Perspective as a Patient Advocate - blog
Infographic on health literacy by European Patient Forum: Health Literacy - what you need to know
NIHR Learn Zone - Learn Zone for Patient and Public Involvement and Engagement in research the NHS (UK)
A letter to my Juvenile Idiopathic Arthritis - JIA - the inspiring blog of an Irish teenager of living with the condition