EFA News: Introducing new EFA board

EFA has elected a new board and President at theits 20 year anniversarycelebration AGM in Paris on the 6th of May this year! Breda Flood of the Asthma Society of Ireland took over from outgoing President Marianella Salapatas, after Marianella's term came to an end this year. Breda has served on the board for three years and has acted as EFA Treasurer for the last year and a half. Marianella was thanked for her immeasurable contribution to EFA during the last 6 years. The other EFA board members are Christine Rolland of Asthme & Allergies France, Lina Buzermaniene of the Lithuanian Council of Asthma Clubs, Per-Ake Wecksell of the Swedish Asthma and Allergy Association who is also Secretary of the EFA board, and a new addition, Ondrej Rybnicek of the Czech Initiative for Asthma, who was elected by the board as Treasurer.

During the meeting, the EFA Annual Report from 2010 was presented, and EFA's Workplan for 2011 was outlined. The EFA 'Members Steering Group' gave a presentation on member involvement and how to improve outcomes at EU level. In addition the various projects that EFA is involved in were presented and described in order to provide members with an overview of the work that is being carried out at different levels, and for their approval. The AGM also decidedon anew membership fee of 500 euros for 2012, instead of the current 1.500, to enable all to join and stay in the network.

The following day a Network Meeting was held to provide members with an opportunity for more informal debate and knowledge-exchange. Interesting presentations were given by several member organisations, and included such diverse topics as patient participation in research in Sweden, allergy education in Czech schools, and a national allergy programme in Finland. Members can view these presentations and others here.

EFA News: MEP Catherine Stihler hosts European Parliament reception on COPD

On the 15th of June, MEP Catherine Stihler hosted a dinner reception in the European Parliament in Brussels to present and discuss the need for a comprehensive strategy to combat COPD in Europe. The event was held in collaboration with EFA, the European Lung Foundation (ELF) and the European Respiratory Society (ERS). Catherine Stihler, a long-time advocate of COPD patient rights in the European Parliament, stressed that what is needed “is a robust policy framework to allow healthcare professionals to identify patients earlier and make the necessary interventions to tackle this disease effectively.” Outgoing EFA President Marianella Salapatas pointed out that “people who experience symptoms often feel stigmatised and thus often do not seek advice from a healthcare professional until the disease is already in an advanced stage”, a fact which may account for the 75% of those affected by COPD who remain undiagnosed. Press release

EFA News: EFA President Breda Flood speaks at IMI open info day

The newly elected President of EFA, Breda Flood, was invited by IMI (the Innovative Medicines Initiative) in June to speak at an ‘open information day’ to mark the launch of IMI’s 4th call for research and/or training proposals. Over 200 participants attended, and Breda took part in a roundtable discussion in which she shared both her and EFA’s experiences of working on the IMI funded U-BIOPRED project. IMI launches annual calls for funding proposals for projects intended to promote pharmaceutical research and development. The calls are published on the IMI website and interested parties from academia, SMEs, patient organisations and other areas are invited to apply. This year proposals on 7 different topics are being sought, each of which fall under 3 broad categories: the EU Medical Information System; Chemistry, Manufacturing and Control; and Technology and Molecular Disease Understanding. More information

EFA News: Update on EFA Allergy Awareness project

The EFA Respiratory Allergy Awareness project is currently underway and responses to our questionnaire for patient groups have so far been received from 15 countries across Europe. The questionnaire poses various questions relating to the instances of respiratory allergy, access to treatment, quality of healthcare and reimbursement policy in respondents' countries, and attempts to establish an overview of the current state of European respiratory allergy management from patients' perspective. The results, once compiled, will be used as the basis for an EFA book on respiratory allergy in Europe, in a style similarto that ofour Book on COPD in Europe, and the conclusions will be the basis for a political 'call to action' for Europe on respiratory allergy. These will both be launched at a special event scheduled to take place in the European Parliament on the 22 of November 2011, and a representative of each organisation which participated in the study will be invited to attend.

EFA News: GAAPP board elected at Istanbul meeting

On June 11 the first AGM and third meeting of the Global Allergy and Asthma Patient Platform (GAAPP), an initiative from EFA took place during the EAACI (European Academy of Allergology and Clinical Immunology) conference in Istanbul.

Natalio Salmún from Argentina was elected President, and EFA board member Per-Åke Wecksell was elected 1st Vice President. Yu Zhi Chen from China will act as 2nd Vice President, Otto Spranger from Austria will be the Treasurer, Rob Lanteigne from Canada will be Vice Treasurer, Anna Andrałojć from Poland will be Secretary, and Irene Krcmova from the Czech Republic will be Vice Secretary. Antje-H. Fink-Wagner, EFA Project & Fundraising Officer, is to be GAAPP Director.

GAAPP already has 20 members with representatives from each continent and its mission is to support patients with allergies and asthma worldwide in having their rights recognised by governments, health care professionals and the public. This will be achieved through aglobal network for patient empowerment, working together and on equal footing with government and health care organizations, helping establish patient groups in emerging countries, supporting patients’ active role in managing their disease and those close to themin support this, supporting the health and social policy concerns of member organisations, fighting for the best standards of care, supporting emerging countries in the provision of appropriate care, and campaigning for the right of allergy and asthma patients to good air quality.

GAAPP’s first project will be the organisation of sport games for children with asthma aged 14 to 16, due to start on June 21, 2012 in Salzburg, Austria. If you are interested in sending participants please contact antjefinkwagner@efanet.org.

The GAAPP website and brochure will be available in mid July.

Member News: Patientenliga-Atemwegserkrankungen Association celebrates 25 Anniversary

The AGM of the German member of EFA, the Patientenliga-Atemwegserkrankungen, took place at the end of May this year. The motto of the event was '25 years of celebration', and it also marked the launch of their new ‘Patientenliga-Atemwegserkrankungen award of honour’. The first winner was Professor Heinrich Worth from Fürth, Germany, for what was judged to be his outstanding educational programmes and ongoing commitment to people with asthma and COPD. He received the award at this year's conference of German respiratory specialists in April.

The AGM was successful thanks to the contribution of participants to the many open discussions and debates. Antje Fink-Wagner reported on EFA's AGM earlier in the month, as well as EFA´s new membership fee structure.

EU News: Study and recommendations on EMA's communications on medicines

A new independent survey commissioned by the European Medicines Agency (EMA) and carried out by Dr Frederic Bouder has provided several new recommendations on how the EMA – which is responsible for the scientific evaluation of medicines developed by pharmaceutical companies for use in the European Union – could improve its communication on the health benefits and risks of medicines. The report analysed stakeholder expectations and used evidence-based input to develop its recommendations, which EMA said it has already begun to implement. These include improving how messages are communicated to non-expert audiences – including patient –, reviewing how and when to communicate such messages, and involving patients in communication activities on a more regular basis. Summary Report

EU News: Commission launches “ex-smokers are unstoppable” campaign

The European Commission has just launched a campaign aimed at encouraging smokers between the ages of 25 and 34 to quit. Unlike previous campaigns, the focus will be on the advantages to be gained from quitting, from the physical and personal to the financial advantages. It will use ex-smokers and their achievements as role models and the slogan of the campaign will be “ex-smokers are unstoppable”. The main tool will be the iCoach, an interactive digital health coaching platform available for free in all EU languages. The main target group of this tool will be those smokers unwilling to quit and those with high risk in starting again. More information Press release

Other News: New treatment for people with COPD

At the American Thoracic Society meeting this May the results of two major studies demonstrating the effectiveness of a new treatment in the improvement of lung functioning of people with severe COPD, as well as its positive influence on their well-being, were presented.

In COPD, the air sacs in the lungs break down, becoming larger and ineffective. The affected area of the lung expands and causes the healthier areas to be squashed and prevented from functioning properly. By placing small one-way valves in the airway of the affected area, however, it will reduce in size to allow the healthier areas to expand and work effectively. This simple procedure takes approximately 30 minutes and is done using a small medical camera which is passed through the nose or mouth into the lungs. Patients need to stay in hospital on average one night and may go home the next day.

This procedure is now available in selected centres in European countries, and it may be possible to find centres in countries other than those listed as well. Participating centres

Other news: New video game to promote smoking prevention launched

'Smoky Rabbit' is the name of a new video game just launched to promote tobacco prevention! The game was released on the 31st of May this year, World No Tobacco Day, and is available to play for free on the internet (in English, French, Italian, Spanish and German) and to download from the Apple Store for Iphones and Ipads. During the game, players get messages about the dangers of tobacco smoke, the need to protect oneself from passive smoking and the urgency of quitting smoking without delay. The game was developed in collaboration with the French Office for Tobacco Prevention (OFT) and more information can be found on this website.

EFA in the News

EFA was interviewed for an article looking at EU indoor air quality policies. ‘Behind the close doors’ was published on 16 June by Euractiv, an online media tool on EU policy.
On World Asthma Day 3 May, EFA sent out two press releases in connectionwith two EU research projects that EFA partners in: ‘Virtual lung models set to personalise asthma and COPD treatment’ and ‘Art contest to show what life is like with asthma’. The contest is now closed and the winner will be announced at the ERS Conference in September.

EFA in other meetings

Executive Officer Susanna Palkonen took part in Philips Active Ageing THINK TANK on behalf of the European Patients’ Forum (EPF) onMay 9 in Washington.
She took part in the first dialogue meeting between Eucomed, representing medical technology companies and patient organisations on May 26 in Brussels.
She also took part in a working meeting of the HealthVent project, looking at the best scientific evidence linking ventilation and health in Ispra, Italy, on May30-31.
Susanna Palkonen spoke on behalf of theEuropean Patients’ Forum at the International Conference on Health Promoting Hospitals and Services in Turku, Finland, on June2.
EFA President Breda Flood and board secretary Per-Ake Wecksell took part in the EAACI workshop for patient organisations onJune12in Istanbul.
Susanna Palkonen took part in ameeting of the Expert Group on Indoor Air Quality of Directorate General Health 14 June in Luxembourg.
EFA board member Lina Buzermaniene took part in the annual joint meeting of the EMA Working Party with Patients' and Consumers' Organisations and theWorking Group with Healthcare Professionals' Organisations, as well as the EMA Stakeholder meeting on new EU medicines safety and surveillance legislation on June 16-17 in London. A report follows in the next eZine.