Patient organisation round-up, August 2014

This month, patient organisations across Europe have been organising and participating in a range of activities to raise awareness of the importance of lung health.

This month, patient organisations across Europe have been organising and participating in a range of activities to raise awareness of the importance of lung health.

New classroom for people with COPD opens in Spain

The Costa del Sol Hospital in Marbella opened a new patients’ classroom in July, dedicated to people with chronic obstructive pulmonary disease (COPD). The classroom aims to share information and experiences between people with COPD in order to improve their quality of life through peer support and self-management training.

The project has been developed together with the Association for Allergy and Respiratory Disease Malaga (ALERMA).

Find out more.    

Pulmonary Fibrosis Trust take part in the Belper Games, UK

The Pulmonary Fibrosis Trust took part in the Belper Games on 19 July. Last year the event raised £12,000 for three charities, including the Pulmonary Fibrosis Trust, so hopes were high for the 2014 games.

The Trust had quite a large presence this year and people were on hand to help and advise those who required it. Everyone on the charity’s stand had been affected in some way by pulmonary fibrosis, whether they are a sufferer themselves, or have a loved one or friend who is a sufferer, or had lost someone to this disease.

They took a lot of promotional goods to raise awareness of pulmonary fibrosis, such as ribbons, wristbands and enamel pin badges. The pulmonary fibrosis bear, an 8” plush bear with a ribbon featuring the Pulmonary Fibrosis Trust logo, also made its debut at the games.

For more information visit the Pulmonary Fibrosis Trust website.  

See coverage of the Belper Games on the organisation’s Facebook and Twitter.

LOVEXAIR lead lung testing at Madrid Airport

To promote early detection and awareness of lung disease, the Lovexair Foundation is trying to reach the public through new channels and distribution networks. In June they provided testing at the first pharmacy outlet in Madrid airport, Barajas.

There was excellent support from the pharmacy and the event revealed that awareness of lung disease, COPD, and spirometry testing and its importance is still very low. The event offered a high quality test using Easy One equipment. Earlier in the year, Felip Burgos of HU Clinic, Barcelona, led an excellent European Respiratory Society (ERS) training programme on spirometry testing.

People with abnormal results were advised to take a printed copy of their results to their local doctor for further information on their lung health.

Lovexair would like to thank the communication team who helped put this event together, the pharmacy, and the staff and volunteers who performed the spirometry tests.

Visit the Lovexair website.

Call to sign the European idiopathic pulmonary fibrosis charter

Each year around 35,000 people in Europe are newly diagnosed with idiopathic pulmonary fibrosis (IPF). This fatal condition has been around for decades, yet there is no cure and only limited treatment is available. IPF often develops rapidly and many patients are given a survival time of just two to five years.

The European IPF Patient Charter calls for greater awareness of IPF and for better access to care in European countries. The Charter lays down recommendations that, if adopted, would ensure improvements in people with IPF’s quality of life, whilst supporting efforts to find a cure.

For more information visit the IPF Charter website and read the call for action.

Watch the video about the Charter.

German patient information organisation launch videos on best inhaler use

The German Airway League (Deutsche Atemwegsliga) has produced free videos about the correct use of all inhalers available in Germany. The videos can be used by patients as well as physicians and pharmacists to instruct patients.

Posters with pictures of the inhalers and a QR code have also been produced. After identifying their inhaler in the pictures, people can scan the QR code with their smartphone or tablet to watch the video about their inhaler. This system hopes to reduce the impact of incorrect or ineffective inhaler use and is available 24-hours a day, even if pharmacies and medical practices are closed.

Soon, all videos will also be available in English on YouTube and Vimeo. Watch the first video available in English.

Visit the Deutsche Atemwegsliga website.

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