CF Europe

ANNUAL MEETING

11 JUNE 2013

Lisbon

1

AGENDA

• Welcome and roll call

• News from the board

• New members

• Annual Report 2012

– Activities

– Financial report

• Plans for 2013-14

– Projects

– Budget

• Varia

• Agenda for Lisbon

2

CFE: 39 member countries

Albania, Armenia, Austria, Belgium, Bosnia, Bulgaria,

Croatia, Czech Republic, Denmark, Estonia, France,

Germany, Georgia, Greece, Hungary, (Iceland),

Ireland, Israel, Italy, Latvia, Lithuania, Luxembourg,

FYR Macedonia, Moldova, Netherlands, Norway,

Portugal, Poland, Romania, Russia, Serbia, Slovakia,

Slovenia, Spain, Sweden, Switzerland, Turkey,

United Kingdom and Ukraine

CFE members present in Lisbon

Albania, Armenia, Austria, Belgium, Bosnia, Bulgaria,

Croatia, Czech Republic, Denmark, Estonia,

France, Germany, Georgia, Greece, Hungary,

(Iceland), Ireland, Israel, Italy, Latvia, Lithuania,

Luxembourg, FYR Macedonia, Moldova,

Netherlands, Norway, Portugal, Poland, Romania,

Russia, Serbia, Slovakia, Slovenia, Spain, Sweden,

Switzerland, Turkey, United Kingdom & Ukraine

+Saudi Arabia

NEW MEMBERS

• CF Family Association Turkey (KIFDER)

• CF Association Latvia

5

Welcome

Board

1. Birgit

2. Franck

3. Jacquelien

4. Karleen

5. Snezana

6. Reto ()

7. Anja ()

Staff:

Hilde

Member associations

Appointed until elections 2015Bruno Mülhauser (CH)

Alicja Rostocka (Pl)

Advisor:

Georgiana Nitu

STRATEGIESfor a better & longer live for CF patients in Europe

network & capacitybuilding

CF patient representation

promote

CF research

awareness

Inf o & education

access

to care

CF Europe in 2012

• Capacity building & Education

• Patient Representation

• Advocacy & Lobbying

• Communication & Awareness Raising

• Research

• Networking

8

CF Europe in 2012/13

Capacity Building & Education

• CFE conference in Dublin

⁻ 48 participants from 24 countries

⁻ Annual meeting, capacity building, networking

• Baltic CF conference in Lithuania⁻ Cf conference for professionals & families

⁻ Capacity building associations

• South Eastern CF conference in Istanbul⁻ New Turkish CF family association

⁻ Bulgaria, Estonia, SE Europe

• St Petersburg• Medical conference + meeting all CF organizations!!!

• Monkey meets bear

9

CF Europe in 2012

Communication & Awareness Raising

• Communication:

• Folder

• Launch of the new CFE website: www.cf-europe.eu

• Regular updates by e-mail and through the website

• 10x WikiCF owners newsletter and ‘Voices’> associations

• Awareness raising:

• CF week 2012

10

CF Europe in 2012

Communication & Awareness Raising

• Communication:

• Launch of the new CFE website

• Regular updates by e-mail and through the website

• The owners newsletter and the newsletter of WikiCF

• Awareness raising: CF week 2012

11

CF Europe in 2012

Research

• EYIM – Paris

• PO Research Group – Paris/Dublin

• IMPACTT

• EMA

12

CF Europe in 2012

CF/patient Representation

• ERS & ELF (patient representatives)

• Eurordis - Council of European RD Federations

• Clinical Trial Network

• Patient Registry

• Pharma industry (PTC, Vertex...)

CF on the agenda

Patients’ interests

PATIENT ADVOCACY

• European CF Policy Group

• Adult care Task force

• ERS &ECFS

• Survey (1.CFE members; 2. Task force for centers)

• Symposium

• Standards of care

• Centers

• Q&A (best practice)

• Support to national campaigns14

CF contact point

‘info & helpline’

Albania, Armenia, Austria, Belgium, Bosnia, Bulgaria,

Croatia, Czech Republic, Denmark, Estonia, France,

Germany, Georgia, Greece, Hungary, Ireland, Israel,

Italy, Latvia, Lithuania, Luxembourg, FYR

Macedonia, Moldova, Netherlands, Norway,

Portugal, Poland, Romania, Russia, Serbia, Slovakia,

Slovenia, Spain, Sweden, Switzerland, Turkey,

United Kingdom and Ukraine

CF Europe in 2012

Finances

16

17

ACCOUNTS CYSTIC FIBROSIS EUROPE e.V.

WHAT EURO

Reimbursement to the Belgian association for advances in 2011

Salary Hilde De Keyser 2011 34.366,68

Other costs (conferences and working costs) 5.846,34

Annual Conference: DUBLIN

Hotel (rooms & catering) 1815

Travel support for patient representatives 4869,55

Travel Hilde De Keyser 301,63

South Eastern CF Conference: ISTANBUL

Travel (speakers & patient representatives) 3581,35

Accommodation/hotelrooms 3415

Conference hall & lunch 4248

Local transport 137,04

Transport organisers 297,78

ERS conference: Vienna

Travel 254,98

Subsistence 403,32

Lobby & Policy work

Membership Eurordis 2012 25

Dods - eu-lobbying 2000

Salary costs for Hilde De Keyser 19921,565

Board meetings - live meeting in Thun 1372,07

Working costs 1287,09

PC 856,65

IMPACTT (EU project)

translation of questionnaire 80

Website - Michael Gotzen 3.641,40

Salary costs for Hilde De Keyser 19.921,57

Bank costs 13,71

TOTAL 108.642,01

SPONSORING IN KIND

wikiCF & general communication 20000

CFE Finances 2012: Expenses

18

ACCOUNTS CYSTIC FIBROSIS EUROPE e.V.

WHAT EURO

Transfer from 31.12.2011 73957,18

Annual Conference: DUBLIN 2200

South Eastern CF Conference: ISTANBUL

Forest 2000

Yasoo 1000

Novartis 5000

Support from member associtions

Switzerland 10000

Netherlands 10000

Belgium 10000

Italy 4000

Donations 550

Interests 102,36

118.809,54

SPONSORING IN KIND

wikiCF & general communication (Novartis) 20000

RESULT

Income 2012 44852,36

Expenses 2012 108642,01

Balance on 31.12.2011 73.957,18

Balance on 31.12.2012 10.167,53

CFE Finances 2012: Income

CF Europe in 2013-14

• A survey to serve you better

• Capacity building & Education

• Patient Representation

• Advocacy & Lobbying

• Communication & Awareness Raising

• Research

• Networking

19

The Survey

20

Who participated?

21

Albania Macedonia

Austria Netherlands

Belgium Poland

Bulgaria Portugal

Bosnia Romania

Estonia Serbia

France Slovakia

Germany Slovenia

Greece Spain

Italy Sweden

Latvia Switzerland

Moldova UK

22

What do you expect from

CF Europe?

23

Paper copies of the survey are

available!

24

Research -

The CTN - Brochure

• All members received the survey &

questionnaire

• 4 responded

25

Research

The CTN - Brochure

• As many patients as parents responded

• 3 out of 8 did already participate in Clinical

studies

• The feedback on the brochure was very

positive for all aspects we checked, especially

for the content (is the information helpful: 7

out of 8 ‘very good’)

• 7 out of 8 found the length ‘just right’

26

Research

The CTN - Brochure

• Most interesting chapters: 4, 7, 8 & 9

• Most easy chapters: 14 & 5

• Least interesting & most difficult much more

diverse

27

Research –

The CTN - Brochure

• Remarks:

– Importance of ‘end of study’ visit & results

– Lay out not consistent

– Where to find legal advice

– More information on how to get involved as

patients

28

European CF Week 2013

The monkey trailAt this moment the CF

monkey is travelling through

Europe, collecting the

messages, wishes, needs of

the CF community in more

than 30 countries.

29

THE EU – SessionOn November 14 our monkey will present the

Message of the CF community to the EU policy makers

In the European Parliament

Follow the Monkey trail and invite the CF monkey in your country:

www.cfmonkeytrail.eu

18-24/11/2013

European CF Week 2013

• Communication tools

– Spot (TV/Radio)?

– Poster

– Website=www.cfmonkeytrail.eu

• Can you make a 1-minute film?

– Each country

– Young person with CF

– What is your dream for the future

“When I grow up I wonna be/do/reach...”

– send to Hilde (we transfer), with text in English

30

14/11 EU meeting

– Everyone welcome in Brussels

• Register in time

– Invite and inform your MEPs

– Join our policy group !

31

Communication/visibility

• Poster

• Roll up

• Facebook

32

33

CFE Facebook…launched TODAY !Name: CF Europe

Fb link suggestion since “Facebook.com/CFEurope” is not available and only letters and numbers can be used:

Facebook.com/CysticFibrosisEurope

Design: Boomerang

Admin Email: hilde@muco.com

Language: English

Start up content:

Lisbon Congress

Clinical Trials in Cystic Fibrosis: What can be the input of patients in the development of new drugs?

Traveling with cystic fibrosis: Recommendations for patients and care team members

Anti Cross-Infection Requirements and Hygiene Guidelines

Monkey Trip Initiative

I like + Follow CF association’s facebook pages: mail to Hilde

Education and capacity building

• Belgrade 24-26/10/2013

• Greece 2014

• St Petersburg 05.2014

• Goteborg 06.2014

• Brussels 06.2015

34

35

CF Europe in 2013

BUDGET

36

37

ACCOUNTS CYSTIC FIBROSIS EUROPE e.V.

WHAT EURO

Annual Conference: Lisbon 7000

Hotel

Travel support for members

from low resource associations

Travel Hilde De Keyser

SOUTH EASTERN CF

CONFERENCE: Belgrade 7000

Travel support speakers and

patient representatives

Accommodation/hotelrooms

Conference hall & catering

Working costs

Representation & Policy work 5000

Membership Eurordis 2012 75

Survey Monkey - website for

Surveys 250

Representation 2000

Salary costs for Hilde De Keyser 20000

CF week 10000

IMPACTT (EU Project)

Salary costs for Hilde De Keyser 20000

Website and working costs 5000

Bank and legal costs 1000

Working costs 1000

TOTAL 78325

SPONSORING IN KIND

wikiCF & general communication 20000

CFE Budget 2013: Expenses

38

ACCOUNTS CYSTIC FIBROSIS EUROPE e.V.

WHAT EURO

Transfer from 31.12.2012 10167,53

Annual Conference: LISBON 2000

South Eastern CF Conference: Belgrade 5000

Support from member associations

Belgium 10000

France 20000

Germany 20000

Italy 4000

Netherlands 10000

Switzerland 10000

Donations

IMPACTT (EU project) 63.729,84

Interests 100

154.997,37

SPONSORING IN KIND

wikiCF & general communication (Novartis) 20000

RESULT

Income 2013 154997,37

Expenses 2013 78325

Balance on 31.12.2012 10.167,53

Balance on 31.12.2013 76.672,37

CFE Budget 2013: Income

Varia

39