PARE’S Activities – Introducing EULAR PARE

Dieter Wiek Chairman of the Standing Committe of PARE

ENCA Meeting, Genova 29/09-30/09/2016

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• 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

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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

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• 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

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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

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• 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

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• 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

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WAD 2016 It‘s in your hands – take action

http://www.worldarthritisday.org/

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• 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

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• 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

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• 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