EUROPLAN II
Guidance to organise
National Conferences
CNA Meeting – 29 October 2012, Paris
Valentina Bottarelli
Ariane Weinman
EURORDIS
www.eurordis.org
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In this presentation:
Where we stand
Guidance for the organisation of EUROPLAN
II National Conferences
BEFORE the Conference
FORMAT of Conference
CONTENT GUIDELINES
CNA MEETING 29 October 2012 - EUROPLAN II
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EUROPLAN II – where we stand
CNA MEETING 29 October 2012 - EUROPLAN II
EUROPLAN II is part of a broader picture:
The EUCERD Joint Action on Rare Diseases (EJA): March 2012 – August 2015
Implementation Council
Recommendation
On RD
WP4 Supporting national plans
WP5 Coding and classification
WP6 Specialised social services
WP7 The national context
(CoE)
WP8 Integration of national and international
initiatives
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EUROPLAN II – where we stand
WP4 – Support for Plans and Strategies at national level
CNA MEETING 29 October 2012 - EUROPLAN II
Part A
Istituto Superiore di Sanità (ISS)
will provide technical support to
policy makers for developing and
implementing national plans or
strategies on rare diseases:
• 4 workshops to be organised
• 1st Workshop in Sept 2012 –
EURORDIS & Advisors
participated
• Selection of core EUROPLAN
indicators
Part B
EURORDIS will support and
coordinate 20 National
Conferences on RDs to be
organised by National Alliances/
patient groups from EU
(continuation of EUROPLAN I)
Estimated Budget: 404 000 €
EC co-funding for this action: 60%
NB: EURORDIS will support with its own core funding 4 additional National Conferences in Russia, Georgia, Ukraine and Serbia
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EUROPLAN II – where we stand
• Activity 1 : identification of 20 National Conferences
Call for Expression of Interest
19 EU countries selected
4 non EU countries supported with EURORDIS own funds
= total 23 countries
Looking for EU country n° 20 underway
Letters of Agreement with NAs almost completed
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EUROPLAN II – where we stand
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Countries organising a
EUROPLAN conf. for the 1st time
Belgium
Cyprus
Finland
Luxembourg
Portugal
Slovakia
Georgia
Russia
Ukraine
Serbia
Countries organising a
EUROPLAN conf. for the 2nd time
Croatia Netherlands
Denmark Poland
France Romania
Greece Spain
Hungary Sweden
Ireland United Kingdom
Italy
EUROPLAN Conferences are organised by National Alliances or strong RD PO when NA does not exist in a country
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EUROPLAN II – where we stand
CNA MEETING 29 October 2012 - EUROPLAN II
2012
March
kickoff
EJA
26 Nov
Sweden
1 Dec
Greece
2013
Feb
Georgia
April
Cyprus
May
Poland
Ukraine
June
Finland
Nov
France
End 2013 / Early 2014
Belgium
2014
We are
here
2014
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EUROPLAN II – where we stand
• Activity 2 : creating a team of Advisors
Call for Expression of Interest
5 former Advisors ready to continue
5 new Advisors selected EU
= total 10 EUROPLAN Advisors
Assignment of countries to Advisors
Memorandum of Understanding
EURORDIS-Advisors underway
CNA MEETING 29 October 2012 - EUROPLAN II
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In practice:
They ensure day-to-day contact;
They answer to all your
questions on all aspects of the
NC (layout, format, content,
etc.);
They accompany you to design
a tailored programme;
They visit you twice;
They provide a one-day training
on how to organise a NC to
members of NA and other
patient groups
EUROPLAN II – where we stand
CNA MEETING 29 October 2012 - EUROPLAN II
What do the Advisors do?
• Work with the EURORDIS staff
to develop common format and
content guidelines for all
EUROPLAN conferences;
• Act as a liaison between NAs
and EURORDIS staff;
• Advise one or two National
Alliances in addition to their
own NA in preparing the
EUROPLAN National
Conference (NC)
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EUROPLAN II – where we stand
CNA MEETING 29 October 2012 - EUROPLAN II
Avril Daly Ireland
Christel Nourissier France
Dorica Dan Hungary, Romania, Slovakia
Lene Jensen Belgium, Denmark, Portugal
Lily Cannon Cyprus, Luxembourg
Maria Gardsäter Finland, Sweden
Oleg Kvlividze Georgia, Russia, Ukraine
Simona Bellagambi Greece, Italy, Spain
Stephen Nutt The Netherlands, United Kingdom
Vlasta Zmazek Croatia, Poland, Serbia
Assigned Countries to Advisors (home country, similar population size, similar political issues)
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EUROPLAN II
guidance to organise national conferences
BEFORE the Conference
FORMAT of Conference
CONTENT GUIDELINES
Objective of the EUROPLAN National Conferences :
“to provide support to take the necessary steps towards outlining high
quality National Plan or Strategy on RD with concrete objectives in each field”
CNA MEETING 29 October 2012 - EUROPLAN II
EURORDIS produced
a set of tools to support you
in the organisation of EUROPLAN Conferences
This is a user guide to this toolkit
step by step:
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EUROPLAN II
guidance to organise national conferences
Prospective participants – all stakeholders
− Critical stakeholders ?
How to attract stakeholders
− Added value and uniqueness of EUROPLAN conferences
− Consider timing
− Make the most of connections
− Messages that resonate
Communicating the conference
− In particular public authorities (EURORDIS draft letter)
− National authorities involved in EUROPLAN, part A, led by ISS
BEFORE the Conference
Patients and families
Caregivers
Representatives of POs and NAs
Academics and scientists
Healthcare professionals
Social workers
Public authorities (all government levels)
EUCERD members
Insurers
Industry and their trade associations
Managers of centres of expertise
Managers of respite centres
Learned societies
Partners of the EUCERD Joint Action
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EUROPLAN II
guidance to organise national conferences
Steering Committee
− Set up early in the preparatory phase
− Balanced representation of stakeholders
− Organisers, Advisors, national authorities are essential
members
− Steer the entire process: it holds a central role in the
conference organisation, in the programme definition up to the
selection of questions for discussion
BEFORE the Conference
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EUROPLAN II
guidance to organise national conferences
Preparatory works
− Identify location
− Identify date
− Invite participants and speakers
− Make the most of connections
− Messages that resonate
− Financial solutions
− Multistakeholder event
− Need to familiarise with documents virtual office
− Preparatory training
BEFORE the Conference
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EUROPLAN II
guidance to organise national conferences
FORMAT of the Conference
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DAY 1
Plenary Session
Parallel Workshops – Part I
DAY 2
Parallel Workshops – Part II
Plenary Session
6 Main THEMES (
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EUROPLAN II
guidance to organise national conferences
FORMAT of the Conference – Plenary
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Main EU documents
Council Recommendation
EUROPLAN Recommendations
EUROPLAN Indicators
New EU documents
to be presented in plenary
EUCERD Recommendation on Centres of Expertise
EUCERD Recommendation on CAVOMP
Cross Border Health Care Directive
EUCERD Reco. on ERNs: Adoption expected Jan 2013
New EU documents
to be presented in plenary
EUCERD Recommendation on Centres of Expertise
EUCERD Recommendation on CAVOMP
Cross Border Health Care Directive
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EUROPLAN II
guidance to organise national conferences
FORMAT of the Conference – Parallel Workshops
CNA MEETING 29 October 2012 - EUROPLAN II
Main THEMES 1. Methodology and Governance of a NP
2. Definition & inventorying (Information & Training)
3. Research on RD
4. Care: Centres of Expertise & EU Reference Networks
5. Orphan Drugs
6. Social Services for RD
Horizontal THEMES
Sustainability
Patient Empowerment
Gathering Expertise at EU level
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EUROPLAN II
guidance to organise national conferences
FORMAT of the Conference
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Conference are outcome-oriented
WGs set up according to specific topics
WGs responsible to deliver concrete proposals for the
plenary
Specific guidance questions and presentations are
provided to Workshops’ Chairs (CONTENT GUIDELINES)
Steering Committee/ Chairs to sort out relevant
questions according to the national situation
Possibility to print out all questions and hand them out
to the audience
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EUROPLAN II
guidance to organise national conferences
CONTENT GUIDELINES
Specific articles/
measures
in background
documents
Full list of questions
to select for discussion
Sub-theme
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EUROPLAN II
guidance to organise national conferences
CONTENT GUIDELINES
Background documents
FULL VERSION
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EUROPLAN II
guidance to organise national conferences
How to develop your programme with all
these tools?
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EUROPLAN II
guidance to organise national conferences
1. Start from the Workshops - Define Themes:
1st EUROPLAN Conference
− All Themes obligatory but it is possible to merge
2nd EUROPLAN Conference
− If you need to deselect one Theme, argue why
2. Look at Content guidelines – Select questions:
Identify questions with Advisor
Select your list
Send to EURORDIS for discussion & validation
3. Ensure that plenary speakers cover the key EU documents
Prepare your programme
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EUROPLAN II
guidance to organise national conferences
1. Organisers (National Alliance) hold the main responsibility for the
programme
2. Advisors accompany the Organisers throughout all the programme
definition
3. Steering Committee should be involved from the selection of
Themes to the selection of specific questions
4. Chairs and/or Rapporteurs can be involved in the selection of
questions for their own Workshop
5. EURORDIS validates the programme (conformity with common format)
Who is involved in the programme definition
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EUROPLAN II
guidance to organise national conferences
Set of guiding documents “TOOL KIT”
EURORDIS will provide a set of guiding tools and documents,
including:
a common Conference layout;
content guidelines reflecting the thematic structure of the EU main
documents (Council Recommendation, EUROPLAN Recommendations
and Indicators, etc.);
guidelines for Chairs and Rapporteurs;
presentations for the thematic Workshops aligned with the main European
documents.
Organisers will be left enough flexibility to adapt the layout of
the Conferences to the most pressing needs of the RD
community in their respective countries
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EUROPLAN II
guidance to organise national conferences
TOOL KIT available at:
www.eurordis.org
home page, click on Rare Disease Policy
Then click on National Rare Disease Policy
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EUROPLAN II
THANK YOU
CNA MEETING 29 October 2012 - EUROPLAN II
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