April and World Asthma Day 2011 Issue

EFA World Asthma Day News: U-BIOPRED Asthma Art Contest for people with asthma in Europe

The U-BIOPRED project to improve understanding of severe asthma, in which EFA participates as a partner, launched an art contest to bridge the gap between doctors’ understanding of asthma and patients experience of it. The contest is open for all people with asthma, and is a great opportunity for them to engage with the project and express their experiences. Any form of art is welcomed, just as long as the entry can be submitted online. The winner will be invited to the European Respiratory Society Congress in Amsterdam (24-25 September 2011) to receive their award and see their winning entry presented at the opening ceremony. The deadline for entries is 1 June 2011, andEFA invites all members and interested organisations to publish details of the contest on their websites and encourage participation amongst European asthma patients. Leaflet in 10 languages Entry form in 10 languages

EFA News: EFA attends DIA EuroMeeting in Geneva

EFA board member Lina Buzermaniene has been granted patient fellowship of the Drug Information Association (DIA), and attended the DIA EuroMeeting in Geneva from the 28th to 30th of March. DIA is a non-profit professional association of nearly 18,000 members who work in the discovery, development, and life cycle management of pharmaceuticals, medical devices, and related products.

The meeting gathered regulatory agencies, industry representatives, academics, health ministries, and patients. It offered patient organisations the opportunity to network with other stakeholders and gain a broader view of regulatory and global drug developments. Patient representatives spoke at different sessions, and a special welcome reception hosted by the DIA management and global and European presidents was organised for them. Patients also had their own meeting sessions during which they had the opportunity to express their views and offer feedback and ideas for improving next year's programme. The next DIA EuroMeeting will be held from the 26th to the 28th of March 2012 in Copenhagen. Photo Information on fellowship programme and articles by patient reps YouTube Video

EFA News: EFA attends first EMA stakeholders' forum onmedicine safetylegislation

The first stakeholder meeting on implementing the new EU medicine safety legislation (pharmacovigilance legislation) was held at the headquartersof theEuropean Medicines Agency in April with the participation of a wide range of stakeholders including EFA board member Lina Buzermaniene. The new legislation, adopted in December 2010, aims to save lives by strengthening the European-wide system for monitoring the safety of medicines, and will introduce a new system to allow patients to report adverse drug reactions directly. It is due to be in place by July 2012.

Lise Murphy, Eurordis representative and co-chair of EMA Patients and Consumers Working Party, explained that this law is important because patients can are in a position to supply information that is different from health professionals but equally as useful. All stakeholders at the meeting had the chance to express their views and concerns, and different questions were raised including how to harmonise information exchange across countries, how to ensure e-reporting standards, monitor transparency and ensure data protection. It was stressed that a user-friendly system will be essential in order to encourage patient uptake. The second stakeholder meeting will take place on June 17th at EMA headquarters. More information

EFA News: EFA to collaborate in 2nd ICC World Conference of COPD patient organisations

Preparations are underway for the 2nd World Conference of COPD Patient Organisations. This year it will take place on November 6th and 7th in Shanghai, and will be conducted by the International COPD Coalition (ICC). The theme of the conference will be improving COPD patients' lives. Marianella Salapatas, EFA President,is a member of the faculty of the conference, and will speak on behalf of EFA on the subject of COPD patient group advocacy in Europe. EFA will be a collaborator in the conference, as it was in the first ICC conference in 2010 in Rome. Registrations and hotel bookings are now possible. For more information contact copd@evolvegroupinc.com

MemberNews: Italian COPD Patients' Association approves annual activities for 2011

The Italian COPD Patients' Association has recently approved its event and activity programme for 2011. One of the association's main objectives will be to have the Italian Health Ministry's "Essential Levels of Care" officially revised to include COPD as a chronic disabling disease, and various activities and joint actions are planned to help bring this about. Another annual objective is to foster and improve knowledge and research on COPD by participating in an update of the GOLD Italy Guidelines. GOLD is a global initiative to raise awareness and improve the quality of treatment of COPD patients.

The association is also planning many activities to raise awareness of respiratory health: on May 2 it will celebrate "Breath Fest" by setting up stands where spirometry tests will be available. It will attend the EFA AGM in May where it will present on the topic of on-going needs of COPD patients in Italy. Presentations will also be given at a conference in Texas and at the ICC World Conference in Shanghai. On November 16th it will help organise a national Italian conference on COPD. Its slogan will be 'Short Of Breath But Not Alone', in an attempt to raise awareness and understanding of the challenges and issues surrounding COPD.

EU News: European Commission launches consultation on the future of EU funding

In early February the European Commission published a Green Paper proposing major changes to EU research and innovation funding, in an effort to make it more accessible, efficient, and to increase its overall impact. The paper proposes to merge existing programmes including the Framework Programme for research and the Competitiveness and Innovation Programme, with changes coming into effect after 2013.

Before finalising its proposal however, the Commission has launched a pubic consultation on the Green Paper and is seeking the views of interested organisations and individuals including patients. It is possible to make a submission to this until Friday 20th of May 2011. Participants can contribute via an online questionnaire, by sending a written response, by using the interactive blog or by participating in some of the planned events. The responses received will be carefully analysed by the Commission services and used to present a finalised proposal for approval by Parliament and Council. EFA plans to complete the online questionnaire and send a written response. More information

EU News: Telehealth Campaign launched

The Telehealth Campaign, an initiative of several patient, hospital and health industry stakeholders (including the European Patients' Forum, of which EFA is a member) is calling for submissions of successful Telehealth stories to be part of “Real Telehealth Stories”, a brochure to be distributed to the EU institutions, national and regional policymakers, patients, healthcare professionals, managers and industry representatives. 'Telehealth' means the delivery of health-related services and information via telecommunications technologies. It can be something as simple as health discussions held over the phone, or the use of more advanced technology to communicate health information. Stories that place emphasis on the human aspect of telehealth, describe how integrated care is being realised and provide evidence of how benefits are being achieved will be favoured in the selection procedure. The final date for submissions is May 31st 2011. More information and contact details

EFA in other meetings:EPF AGM and Capacity Building Seminar

On April 12th and 13th, Susanna Palkonen and Breda Flood attendedthe European Patients' Forum's Annual General Meeting and Capacity BuildingSeminar in Brussels. Susanna co-moderated a session on member networking andpatient involvement in theEU pharmacovigilance legislation.