Patient organisation round-up: January 2014

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

Patient organisations across Europe have been organising and participating in many activities to raise awareness of respiratory health. From a toy collection campaign in Romania to public spirometry events in the Czech Republic, they have all been hard at work:

Spanish pulmonary hypertension organisation celebrates anniversary 

On 28 November, Fundacion Contra La Hipertension Pulmonar celebrated 11 years since the creation of their organisation. Watch a video they produced as part of the celebrations, which showcases how their organisation is supporting people with pulmonary hypertension.

Asthma Society for Ireland launches a wintertime awareness campaign  

The Asthma Society of Ireland (ASI) have been raising awareness of asthma triggers during wintertime and the need for people with asthma to take precautions. 

ASI’s asthma nurse specialist, Frances Guiney, emphasised the importance of taking your daily prescribed medication and having your reliever with you at all times. She says “fluctuating weather conditions, common colds, viral infections and flu can cause symptoms of asthma and can bring on an asthma attack.” Stress and certain Christmas decorations can also cause asthma conditions to worsen. 

For more information visit the website.  

UK patient organisations host symposium on rare childhood lung diseases

A coalition of patient organisations attended the British Thoracic Society meeting to host a symposium entitled, ‘Rarities: Really Rare?’ looking at the latest research into rare childhood lung diseases. The session was co-chaired by Fiona Copeland, Chair of the UK-based PCD Family Support Group and was well attended. Read the full article.

Czech COPD events attract large crowds and press coverage 

The Czech Civil Association Against COPD, in partnership with the Czech Pneumological and Phthisiological Society, held a number of events to mark World COPD Day (20 November 2013). These events included:

  • a press conference with radio coverage 
  • a scientific meeting of over 70 physicians and nurses to discuss COPD
  • public spirometry events in 5 cities – over 2400 people had their lungs tested
  • educational meetings in 6 clubs for older people

For information about the events click here.

New COPD patient pathway in the UK

The British Lung Foundation has recently launched the new COPD patient pathway. This is an online guide to best practice treatment options at all stages in the COPD patient journey, from diagnosis through to end-of-life. Visit their website to find out more.

Romanian organisation holds toy collection campaign for children with TB

In the lead up to Christmas, ARB-TB, a Romanian charity for adults and children affected by tuberculosis collected toys for children with TB. The children were all staying in the Marius Nasta Institute in Bucharest. The campaign was supported by Daniela Gyorfi, a well-known Romanian singer and was widely covered by the local media. Read the full article here

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