Patient organisation round-up, April 2014

Patient organisations across Europe have been organising and participating in many activities to raise awareness of respiratory health.

Spain celebrates World Pulmonary Hypertension Day

In 2012, the Spanish National Pulmonary Hypertension Association organised the first celebration of World Pulmonary Hypertension Day. The event will happen again this year across Europe with the theme of “Get Breathless for PH”.

This year, WPHD celebrates a new partnership with Ironman, the world’s toughest triathlon event. PHA Europe will renew its cooperation with Ironman Europe and is the official charity of the sports organisation in the European region. There will be a strong presence of PHA Europe and its members in six Ironman races in 2014 to celebrate World PH Day: Spain, France, Austria, Denmark, Germany and Switzerland.

Athletes will run with the WPHD logo and there will be a Pulmonary Hypertension booth with information and activities at the expo areas.

To support World PH Day, follow PHA Europe on Facebook and Twitter and use the hashtag #WorldPHDay

European Lung Cancer Group hold annual thoracic oncology day

The European Lung Cancer Working Party (ELCWP) will hold their 15th annual thoracic oncology day next month on May 10. During the event, several speakers and patients will share their opinions on e-cigarettes. Find out more information on the event.  

The ELCWP have also established a patient group called Vaincre. They have a number of publications available for patients in French. 

Passengers on the Metro Madrid receive free lung function test

On 3 and 4 April, more than 500 passengers on the Metro Madrid participated in a free lung function testing event, organised by Lovexair Foundation, NeumoMadrid and Air Liquide.

The spirometry event, which was carried out in two of Madrid’s main metro stations, coincided with the Madrid Pulmonary Society’s Scientific Conference. The aim of the event was to raise awareness of the importance of early diagnosis of lung disease and encourage people to get their lungs tested for free. The event was a success, with 1 in 5 of all the tests carried out detecting early lung problems that had not been previously diagnosed.

This year, Lovexair Foundation is training young professionals on how to carry out spirometry tests, in order to hold more events in new locations and begin to detect the 75% of people in Spain with respiratory diseases that have not yet been diagnosed.

Read the full article (in Spanish).

Mesothelioma survey aims to support research into diagnosis and treatment

There’s still time to complete a mesothelioma survey launched by the James Lind Alliance with support from the National Institute for Health Research in the UK.

The survey aims to inform future research into mesothelioma diagnosis, treatments and care.

The group is hoping to hear from as many people as possible with mesothelioma, their carers and their health professionals, so that they can identify all of the questions needed to be considered in future research. The survey is available here, and will close at the end of April.

If you’d like to share your news with us, contact us. Don’t forget, you can submit your news stories in any language and we can translate them to include in our newsletter.

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