35 rue du Congrs, 1000 Brussels, Belgium, Tel: [phone]

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35 rue du Congrès, 1000 Brussels, Belgium, Tel
32 (0)2 227 2712

• European Federation of Allergy and Airways
  Diseases Patients Associations EFAMember
  Activities

Marianella Salapatas, EFA President GARD
Conference, Rome, 13th of June 2009
www.efanet.org
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CONTENT

• EFA Structure and Objectives
• Projects of EFA Members
• General projects in Respiratory
• COPD Projects
• Allergy Asthma Projects
• Political Advocacy Work EFAs specific strenght
• EFAs new project

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Founded 1991, EFA is a non-profit European
network of Allergy, Asthma COPD Patient
Organisations
21 Countries 32 Member Organisations Over
500.000 Patients Carers
Funding Member Fees 15 EU Commission 35
Corporate Partner 50 Accounts Auditing

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STRUCTURE MISSION

• Structure
• Highest governing body Annual General Meeting of
  Members
• Board 5 persons from different member
  organisations and countries, 5 meetings/ year
• Secretariat
• Excecutive Officer, Project Fundraising
  Manager, Policy Training Supporter
• Project Member EuroPrevall FP6, GA2LEN team
  leader, COPD Advisor, Medical Advisor
• Working Groups with members
• Mission
• Reduce frequency severity of allergies, asthma
  and COPD
• Minimize societal implications
• Improve health-related quality of life
• Ensure full citizenship
• Pursue equal health opportunities in Europe

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Unbiased Biomarkers for the Prediction of
Respiratory Disease Outcome U-BIOPRED
Innovative Medicines Initiative priority
understanding severe asthma
Hypothesis Biomarker profiles from
high-dimensional molecular, physiological, and
clinical data integrated by an innovative
systems biology approach into distinct handprints
will enable the prediction of therapeutic
efficacy and identification of novel targets in
the treatment of severe asthma

• Patient input (EFA, Netherlands Astma
• Fonds and Asthma UK)
• Patient-oriented outcomes
• Defining research questions
• Disease knowledge
• Access to patient networks
• Ethics
• Safety
• Strategic Advise
• Help in planning and running study
• Teaching
• Informed consent
• Dissemination, training, exchange
• Patient-public-private partnerships
• Consensus generation

18 June 2009 International consensus meeting on
diagnostic criteria, the Netherlands
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Projects of EFA Members

• General Projects in Respiratory

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Luftpost Airmail by the League of Patients
Afflicted with Airway Diseases Germany

• Aim
• Convince patients with chronic airway diseases
  about the need to develop a sense of own
  responsibility and willingness to understand the
  own disease to live with it in the best possible
  way, of course in all medical issues advised and
  guided by doctors
• Content
• Distribute regular comprehensive information
  concerning diagnosis and treatment of asthma and
  COPD to better understand how patients can
  contribute and self-manage individual airway
  diseases
• Solution
• Magazine Luftpost Airmail, articles written
  by physicians
• specialized in airway diseases and experienced,
  well controlled
• patients, circulation 15.000, two times p. a. in
  spring and autumn
• Result
• Magazine since 1989 with increasing
  demand,estimated number of readers 25.000 to
  30.000
• Website Contact www.patientenliga-atemwegserkran
  kungen.de
• Distribute regular comprehensive information
  concerning diagnosis and treatment of asthma and
  COPD to better understand how patients can
  contribute and self-manage individual airway
  diseases
• Solution
• Magazine Luftpost Airmail, articles
  written by physicians specialized in airway
  diseases and experienced, well controlled
  patients, circulation 12.000,
  two times p. a. in spring and autumn

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Lungcarecheck.nl Dutch Astma Foundation

• Following the model of TripAdvisor.com, care
  users (patients)
• give their assessment of the quality of care as
  delivered by
• Care providers
• 10 simple questions for 10 simple items, related
  to the agreed standard of care
• 1 to 5 star scores by care users
• Operational by the end of 2009
• Ultimately available to assess all care providers
• Positive instrument to improve quality of care
• Assistance for care users in choosing care
  providers
• michael.rutgers_at_astmafonds.nl

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MEDICINES ADMINISTRATION AT SCHOOL
AIM Support the proposal of a law entitled
Implementation of School Health Departments
Regulations to Prevent and Control Allergies and
Asthma Project 2008 one Primary school at Rome
performed a test granting the presence of one
trained nurse for 100 days Outcome During the
test period the nurse was called 536 times and
performed relevant reduction of - School hours
lost by pupils, - Emergency calls to parents to
take their child home, due to an asthma attack -
Loss of working hours by parents - Unnecessary
calls to the sanitary emergency number 118 became
reduced
from 8 calls at the same period in 2007 to
1 during the test period Consequence Trial now
expanded to five schools (4000 pupils) for three
years Contact segretaria_at_federasma.org
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Joint conference of Patients
onnational and European level, Physicians and
Nurses, Warsaw, PL Organized by the Polish
Federation of Patients with Asthma, Allergy and
COPDInfo astma.federacja_at_gmail.com,Website
www.astma.waw.pl Aim Conference was the top
of a campaign to promote the following topics -
Introduction of smoking ban in as many public
places as possible - Promotion of patients
education - Introduction of the modern
rehabilitation for patients with chronic
respiratory diseases, financed by the National
Health Fund - Palliative care of patients with
incurable non-cancerous respiratory diseases -
Introduction of respiratory nursing due to the
specific character of nursing care in
respiratory diseases Outline Three days meeting
with parallel sessions, including press
conference Results 500 participants and
impressive awareness by media patients
environment


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Projects of EFA Members

• COPD Projects

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The FFAAIR - French Federation of Associations
of Patients with Respiratory Insufficiency or
Handicap.
It is possible to cope with COPD, but it is
necessary to be a fighter
In April 2008 the FFAAIR member Jean-Marie
Ederer, a COPD patient with oxygen apparatus has
realized a run Paris-Brest, 500km in bicycle.
15 French cities, more than 3000 patients and
their family members have taken part in the
Tour de France of sleep apnoea in 2007-2008.
There were meetings were patients shared their
experience and received answers for their
questions.
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Quality of COPD care from Patient Perspective

• Aim To develop criteria of quality of COPD
  healthcare from the perspective of patients
• Project
• Survey What do you think? among patients with
  COPD (9 focus groups)
• The results discussed in group of care
  professionals
• Methods used are the Delphi method and the AIRE
  instrument (Appraisal of Indicators through
  Research and Evaluation)
• Outcome
• Publication COPD criteria of quality from the
  perspective of patients,
• used by the Lung Alliance of the Netherlands
  (composed of a broad spectrum of organisations
  involved in the care of patients with lung
  diseases) to create a
• care standard COPD
•  
• Organisation
• The Dutch Vereniging Nederland
  Davos and the
• Astma Patienten Vereniging
  VbbA/LCP
• (since 2009 part of Astma Fonds)

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• The Italian COPD Patients Association
• presents
• Breathless and a pinch of folly
• An amusing satirical show based on the patient's
  daily experiences that aims at
• Taking a lighthearted look at the patient/doctor
  dialogue
• Making the spirometry test hilarious
• Showing how to (mis)use medical terms
• Preventing and stopping smoking
• Increasing awareness about this chronic
• disease

wwww.pazientibpco.it
Positive, reassuring message COPD patients
should be more confident that they are able to
manage their disease. We can win the war against
COPD!
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The Pulmonary Association Heli, Finland
The Multidiciplinary, Demanding Group
Rehabilitation at Home for COPD-Patients with
Oxygen Therapy and their next of Kin in
2006-2008 (N22 couples) Contact
mervi.puolanne_at_heli.fi
Does home intervention among couples support
their voluntary peer group contacts after
the rehabilitation interventions? Benefits
of the home interventions to the couples for
coping with the disease?
INTERVENTION IN REHAB CENTER 8 days 6 couples
INTERVENTION IN REHAB CENTER 5 days 6 couples
ORGANIZED AND VOLUNTARY PEER CROUPS
INTERVIEW AT HOME
ORGANIZED VOLUNTARY PEER GROUPS
INTERVENTION AT HOMES 4 times, 1 day 4 days 2
groups (33 couples)

• Voluntary peer group contacts Very active
  and continuing even after the death of the spouse
• Benefits of home interventions
• Intimate discussion about the fear of death,
  death itself, how to cope with death, the last
  will....
• To cooperate with the supporting local
  authorities
• To test the activities of daily living, as
  learned in the Rehab Center with the guidance of
  the staff

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World No Tobacco Day 2008

• The Association of Bulgarians with Bronchial
  Asthma ABBA, the Bulgarian Ministry of Health and
  the
• Bulgarian Society of Pulmonary Disease
• National Awareness Campaign
• From Smoking to COPD

• Call center 0700 10 105
• One month
• 40 Health centers in 28 cities
• 2700 doctors visits
• Free measuring lung capacity

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Projects of EFA Members

• Allergy Asthma Projects

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WAD 2008 Lithuanian Council of Asthma Clubs
www.astmainfo.lt

• Council of 23 regional organisations all over
  Lithuania on voluntary work without office and no
  paid staff
• Every year WAD is organised in a different region
  of LT
• WAD 2008 over 400 people gathered to increase
  awareness of asthma

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Association Asthme Allergies France An
optimistic way of communication

• French Allergy Day
• World Asthma Day
• Annual meeting for patients
• Creation contest on www.asthme-allergies.org

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I HAVE ASTHMA SO WHAT?World Asthma Day,
Serbia, 2007
JUDAH Association for Asthma and COPD

• Objectives
• Raising awareness about possibilities to have
  asthma and its treatment, ensure normal childhood
  
• Communication of World Asthma Day key values and
  messages
• Activities
• Advanced medical exams and on-the-spot treatment
  for children with asthma 66 children from five
  poor regions in Serbia
• Donation by GSK asthma treatments, social events
  movies, zoo, dinner
• Involvement of highest level government officials
  and media
• Facts and figures
• Bus transport of children from five different
  Serbian regions
• Diversity fully represented children of
  Serbian, Albanian, Hungarian and Rome background
• 50 journalists/ editors at media activities
  (Press release, press conference at main event)
• Our Partners key figures involved
• President of Serbia, Mr Boris Tadic and the
  Peoples Office of the President of Serbia
• Minister of Health, Dr Tomica Milosavljevic
• JUDAH local NGO of asthma patients and doctors

Minister Milosavljevic visits children
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Workplace Charter
Aim The Workplace Charter was developed in the
belief that no-one should have to work in an
environment that compromises their health and
well-being and is aimed at raising awareness of
occupational asthma and how to prevent it.
Outline Every year in the UK, up to 3,000
people develop asthma due to substances they are
exposed to at work. Asthma UK promotes
the Charter to employers, who through increased
awareness, can protect their employees from the
causes of occupational asthma and conditions
which trigger symptoms of pre-existing asthma at
work. Outcome Promotion of the Workplace
Charter has been effective in raising awareness
and several key industries have signed up to it.
asthma.org.uk
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ALLERGY AND ASTHMA AT SCHOOLin the Czech
RepublicContact Richterova.tr_at_seznam.cz and
richter.tr_at_seznam.cz
Aim To increase the knowledge of teachers about
potential health issues of children with allergy
and/or asthma at school 2008 05/ 2009
Preparatory Work April 24, 2009 Presentation
of the project at the pedagogical
forum (Ministry of Education) June 2009 Expected
certification of CIPA by the Ministry
of Education for education of primary
and secondary school teachers in
allergy and asthma issues at schools Fall
2009-2010 Regional educational courses for
teachers
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Childhood Asthma Awareness Campaignwww.allergype
d.gr
Thessaloniki
Patra
Athens
600 children 2000 adults 4/5 ? IgE (whole or
specific) 3/5 ? Positive
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Switzerland aha!, competence centre for allergy,
skin and asthma (www.ahaswiss.ch)

• Initiator Swiss competence centre for Allergy,
  skin and asthma (aha!), Berne
• Integrated web based daily information on pollen
  and allergy
• Cooperation of the Official Swiss Meteorology
  Institute and aha! provides
• local pollen reports, daily pollen forecasts,
  expected health effects
• instructions for appropriate measures for allergy
  sufferers
• integrated Email newsletter
• Languages german, french, italian
• Several thousand visits per day and 3000
  newsletter subscribers
• www.pollenundallergie.ch

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Norwegian Asthma and Allergy Association (NAAF)

• The trick an animated short film about
  children with asthma (10 min.)
• With the right medication you can have an active
  childhood despite asthma
• For children and carers, and professionals in
  education and health
• An integrated part of Norwegian patient education
• Available as DVD and on NAAFs homepage
• http//www.naaf.no/no/Aktuelt/Ane-og-Bronky-gar-ti
  l-filmen/

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GREAT! A customer with food allergy!By The
Swedish Asthma and Allergy Associationin
cooperation with The Swedish Hotel and
Restaurant Association and Lloyds Register.Will
help restaurants become more suitable for
customers with food allergies A two-step
training programme- a basic four hour course -
a full day course that aims to certify
restaurants www.astmaoallergiforbundet.se
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Good for you, not good for meHow to explain to
children the danger of food allergies
Contact Prévention des allergies, Brussels,
Belgium fpa_at_oasis-allergies.org
www.oasis-allergies.org

• AIM
• To improve knowledge of food allergies in 2-7
  years old kids
• Explain to healthy children, why allergic peers
  cannot share their meals
• CONTENT
• Book of pictures, using the example of animals
• Inspired by N. Abécassis from her own experience
  as a
• mother and illustrated by her brother Shlomo
• Published in the French Community of Belgium
  with the
• support of the Minister for Children, Youth
  support and
• Health, Catherine Fonck
• DISSEMINATION
• Each school for kids will receive a free
• copy. Other copies are available for a small fee

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Asthma-Allergy Association, DenmarkProject
Awareness of children and second-hand smoke

• Aim To reach children aged between 7-10 yrs,
  their parents and raise awareness on the issue.
• Outline Through a colourful universe peopled by
  a boy-giraffe and his smoking mother to give
  advice
• Outcome App. 500 schools required the material
  and sent drawings and comments back

• See more on
• http//dinhverdag.astma-allergi.dk/rygning/roegbor
  togcigiraffen

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Asthma courses in Sweden eight day camp!

• Since 1981 the Swedish Asthma and Allergy
  association in Linköping has organized eight-day
  camp for children 8 to 15. The camp take place in
  Idre in the north of Sweden.
• The aim of the camp is to provide participants
  who have asthma and allergies with an oppertunity
  for physical activity and to improve their
  ilness, all in a positive environment and under
  expert guidance.

Access to medical staff is a great source of
securityf or the participiants. The medical team
consists of a doctor, a nurse and a
physiotherapist. Some of the resultes we have
achieved All the family members learned more
about asthma. We have been able to periodically
lower childrens medication by a third. The
children gained in confidence.
For more information, please contact
eva-maria.dufva_at_astmaoallergiforbundet.se
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Austrian Patient Perspective on Severe Asthma
How do your symptoms affect your daily
live? 209 severe asthmatic patients
Method CAWI ComputerAssistedWebInterviews
Questionnaire 60 questions Outcome Disturbed
sleep 30 every night Problems to speak 5
every day, 14 gt 1/ week Exacerbations
(bact.inf.) 75 3 or more per year Limited
social activities 73 Fear to
suffocate 40 Allergy 75 Smoking 16
still smokers, 35 ex smokers Corticophobia 43
My doc knows a lot about asthma GP 29
Lung Spec. 74 Report ready in two
month Information www.lungenunion.at
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Allergy and Asthma Federation, Finland Finnish
Allergy Programme 2008-2018

• Aim to implement the Finnish Allergy Programme
  in
• health care and population, together with the
  Finnish Lung Health
• Association Filha and Pulmonary Association Heli
• Content Informing and educating associations,
  health care
• professionals and the whole population
• Key messages of the Allergy Programme Endorse
  health, not allergy. Strengthen tolerance. Adopt
  a new attitude to allergy, avoid allergens only
  if mandatory. Recognise and treat severe
  allergies early. Prevent exacerbations. Improve
  air quality, stop smoking.
• Outcome Allergy Programme effectively brought
  into use
• More information www.allergia.fi,
  international_at_allergia.fi

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Asthma Society of IrelandAim To make asthma
care a political priority in Ireland

• ?April 2008 Asthma Society of Ireland
  Information Briefing for all Members of the Irish
  Parliament
• ?November 2008 Asthma Society of Ireland
  Presentation to the Parliamentary Health
  Committee
• ?November 2008 Asthma Society of Ireland met
  with the Minister for Health
• ?December 2008 Action Group was established by
  the Minister for Health
• ?January 2009 Minister for Health, accompanied
  by Asthma Society of Ireland, visited Finland and
  met with leaders of the Finnish Asthma Programme
• ?June 2009 Asthma Management Programme
  developed by Asthma Society of Ireland in
  partnership with Department of Health
  begins phased roll-out
• 
  
  
• ? Further
  Information jean.holohan_at_asthmasociety.ie

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35 rue du Congrès, 1000 Brussels, Belgium, Tel
32 (0)2 227 2712

• Political Lobby Work
• EFAs specific strenght
• To influence policy making in
• In/outdoor air
• Health care
• Communicating patient perspective to policy makers

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35 rue du Congrès, 1000 Brussels, Belgium, Tel
32 (0)2 227 2712

• Beyond Europe
• EFAs new project
• EFA expands interest
• Interacts with other continents

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35 rue du Congrès, 1000 Brussels, Belgium, Tel
32 (0)2 227 2712

• EFA asks for Support
• from GARD

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SUMMARY

• EFA s independent network of patient
  organisations is well accepted as partner for all
  involved in the field of respiratory diseases
• EFA is open for innovative partnerships and
  demonstrates its view of added value by
  participating in projects or outline and manage
  own projects
• EFA developed over 18 years a successful model to
  increase patients influence into their own
  disease management and plans to help respiratory
  patients on other continents to create something
  similar
• EFA ask GARD to support our plan of a worldwide
  summit of patient organisations in respiratory

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www.efanet.org

• Thank you
• GARD
• BPCO
• FEDERASMA