Post on 15-Apr-2017
PARE’S Activities – Introducing EULAR PARE
Dieter Wiek Chairman of the Standing Committe of PARE
ENCA Meeting, Genova 29/09-30/09/2016
2 02/05/2023
• People with RMDs are actively involved in activities and projects. A user-led / user-centred approach
• Work should be transparent, accountable, representative and inclusive
• The wider community of people with RMDS should benefit from activities
• PARE’s and its member organizations’ activities and work are characterized by collaboration and partnership
Values and Principles PARE
3 02/05/2023
Raising awareness
Supporting national patient organisations for RMDs
Educating patient representatives and their organisations
Extending and improving the network of patient organisations
Enhancing patient involvement in all areas
Political lobbying on EU level (Brussels)
Objectives of EULAR PARE
A glance at EULAR PARE Activities
Knowledge Transfer Programme
Engagement Programme
5 02/05/2023
• Apply for a grant! The total sum of € 15. 000 will be awarded to successful project applications annually
• Programme designed for organisations to learn from each other
• Programme opens 1 October – send applications in by 31 December
• Read guidelines and reports of former successful projects on EULAR website
• http://www.eular.org/pare_knowledge_transfer_prgm.cfm
Knowledge Transfer Programme
6 02/05/2023
Aim & Objectives
Improve the quality of life of people with RMDs by engaging with national organisations
Raise the profile of RMDs & of the organisations involved
Facilitate a mechanism for national organisations and EULAR to collaborate nationally
Foster collaborations between EULAR member organisations and other stakeholders at national level
Share knowledge about EULAR programmes and activities
http://www.eular.org/st_com_pare_engagement.cfm
Engagement Programme
2 May 20237
2 May 20238
9 02/05/2023
• Finland, Sweden, Denmark, Norway and Iceland
• September 2 days in Stockholm and January 2017 2 days in Finland
• Objectives:
- design a common Nordic youth camp –concept
- create channels that could help young people stay in touch
between the annual meetings, e.g. by social media channels
- get more youth members to all associations
- start with Nordic camp, learn from that and create European camp
EULAR Knowledge Transfer Programme – application
10 02/05/2023
• Annual educational conference organised by PARE
• To inspire, educate and empower the delegates and their national organisations by providing expert speakers and sharing best practices
• The 19th annual conference was in Sofia 2016: >120 delegates from 33 countries - http://www.eular.org/pare_annual_conference.cfm
• Workshops on wide range of topics e.g. comorbidities, online educational tools, transition phase of young people with RMDs, setting up a youth group, improving communication between patients and their healthcare team, changing perceptions of RMD
Annual European Conference of PARE
World Arthritis Day 2016
12 02/05/2023
WAD 2016 It‘s in your hands – take action
http://www.worldarthritisday.org/
li
13 02/05/2023
• Standing Committee meeting at Congress
• PARE sessions, well attended
• Participate actively
submit abstracts – opens 1 October, ends 31 January 2017 http://www.congress.eular.org/abstract_submission.cfm seize the opportunity to share what is happening in your
country• PARE booth – place to meet European Rheumatology
community, chance to display what is happening in your country
Annual European Congress of Rheumatology
14 02/05/2023
• Annual writing competition
• Patients across Europe share their individual stories to encourage others and create awareness
• Best essays are compiled for an annual booklet
• Powerful tool to demonstrate the courage, wisdom and visions of people with RMDs
• http://www.eular.org/myUploadData/files/Stene%20Prize%20Rules%202017%20-%20final.pdf
• Entries by 31 December
• “Early diagnosis and access to care …The ideal world and the reality …”
Edgar Stene Prize – the voice of the patients
15 02/05/2023
• E-newsletter of Standing Committee of PARE
• Issued 3 times a year plus special EULAR congress issue
• Features among other items reports from national member organisations
• Your input valued - please share your news
• http://www.eular.org/pare_newsletters.cfm
E-Breakthrough
Patient involvement in research
EULAR Patient Research Partner Network
Northern Europe
L. Andersen, Denmark
H Bertheussen, Norway
K. Fligelstone, UK
R. Hawkins, UK
A. Higginbottom, UK
A. Kent, UK
K. Lerstrøm, Denmark
R. Mahapatra, UK
N. Nestor, Ireland
F. O’Nia, Ireland
M. Toft, Denmark
S. Stones, UK
J. Walker, UK
Central Europe Southern Europe
G. J. Aarnerud, The Netherlands
M. Bakkers, Netherlands
P. Balazova, Slovakia
N. Caeyers, Belgium
M. De Wit, Netherlands
E. Decantere, Belgium
K. Eickholt, Germany
D. Hollander, The Netherlands
F. Klett, Switzerland
G. Severijns, Belgium
J. Van Rompay, Belgium
C. Rusthoven, The Netherlands
G. Von Krause, France
J. Welling, NL
K. Werner, Switzerland
D. Wiek, Germany
C. Carvalho, Portugal
S. Makri, Cyprus
F. Marchiori, Italy
E. Mateus, Portugal
D. Mazzoni, Italy
D Papastavrou, Greece
I. Pitsillidou, Cyprus
T. Jasinski, Estonia
C. Zabalan, Romania
B. Boteva, Bulgaria
S. Bojinova, Bulgaria
Eastern Europe
Activities of Patient Research Partners
EULARManagement RecommendationsPoints to considerClassification criteria
Health Professions Projects
Review of lay summaries for Annals of Rheumatic diseases
EULAR Study Groups
Review of grant proposals:- Patient reported
Outcomes- Pain- Osteoarthritis
EU RESEARCH
Horizon 2020 / IMI / FP7
• APPROACH
• AutoCure
• BTCure
• EUPATI
• Eumusc.Net
• EUROteam
• HarmonicSS
EMA
- Rheumatoid Arthritis
- Adult onset Still disease
- Systemic Sclerosis
FOREUM Research Foundation
Secretariat• Coordination of the PARE PRP
network
• Implementation of recommendation for inclusion of PRPs in scientific initiatives
• Advice to researchers
Optional:• Pharmaceutical industry• National PARE organisations
• Executive Committee member• Scientific Committee member• Review of research applications• Involvement in research projects
Reference cards and brochure
Reference cards and brochure - your local edition
Use the EULAR edition as a basis and translate to your own language
Aknowledgment to EULAR
Scientific language – understandable
State of the art science – translate into your language!
Discussion
Ideas or input for our agenda / work? Future projects for EULAR support – discuss and share ideas with us Communication with you and your organisation – what could be improved?
Define liaison! Participation at PARE Annual Congress in Lisbon, Portugal, 23-26
February? - contact Maria, Birte for details concerning bursary, conditions, … - observe strict deadlines
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Thanks for your attention