europlan ii guidance to organise national...

EUROPLAN II

Guidance to organise

National Conferences

CNA Meeting – 29 October 2012, Paris

Valentina Bottarelli

Ariane Weinman

EURORDIS

www.eurordis.org

2

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

3

EUROPLAN II – where we stand


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

4


WP4 – Support for Plans and Strategies at national level


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

5


• 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


6



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

7



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

8


• 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


9

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



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)

10



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)

11

EUROPLAN II

guidance to organise national conferences


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”


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:

12 CNA MEETING 29 October 2012 - EUROPLAN II

13

EUROPLAN II


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


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


14

EUROPLAN II


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



15

EUROPLAN II


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



16

EUROPLAN II


FORMAT of the Conference


DAY 1

Plenary Session

Parallel Workshops – Part I

DAY 2

Parallel Workshops – Part II

Plenary Session

6 Main THEMES (

17

EUROPLAN II


FORMAT of the Conference – Plenary


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

18

EUROPLAN II


FORMAT of the Conference – Parallel Workshops


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

19

EUROPLAN II


FORMAT of the Conference


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

20

EUROPLAN II


CONTENT GUIDELINES

Specific articles/

measures

in background

documents

Full list of questions

to select for discussion

Sub-theme


21

EUROPLAN II


CONTENT GUIDELINES

Background documents

FULL VERSION


22

EUROPLAN II


How to develop your programme with all

these tools?


23

EUROPLAN II


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


24

EUROPLAN II


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


25

EUROPLAN II


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


26

EUROPLAN II


TOOL KIT available at:

www.eurordis.org

home page, click on Rare Disease Policy

Then click on National Rare Disease Policy


http://www.eurordis.org/

29

EUROPLAN II

THANK YOU


europlan ii guidance to organise national...

Documents