Patient organisation round-up, June 2014

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

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

EFA event at European Parliament looks at meaningful patient involvement in research

The public event, held on Tuesday 17 June, was entitled ‘Does innovative research for allergy and respiratory disease in the European Union benefit patients?’

The event (pictured above) presented an excellent opportunity to demonstrate how patient and researchers can work together on EU-funded health projects to deepen understanding of these disease areas and maximise benefits to patients.

Further information is on the EFA website.

TB information initiative wins Aspirin Social Prize

Explain TB, supported by German tuberculosis (TB) patient organisation Take That TB, is a tool to provide information and advice for migrants with TB who move to Germany and other European countries and need support to communicate with healthcare professionals. Language and cultural differences can be a major challenge to accessing treatment.

Explain TB is a free smartphone app with videos on a range of topics relating to TB provided in 14 languages. It received the Aspirin Social Prize in recognition of its potential to benefit the half a million people affecting by TB in Europe each year.  

Find out more about Explain TB and the Aspirin Social Prize.

Find out more about Take That TB

Portuguese organisation holds events to raise funds for cystic fibrosis programmes for children

Each year the Respiralia Foundation organises a programme of events to spread the knowledge of cystic fibrosis and raise funds for health care programmes for children with CF. This year’s events will be held in June and July:

  • 19–21 June Saint John Padel Tournament  Respiralia Trophy
  • 27 June Respiralia Concert “Breath with the piano of Biel Duran”
  • 4–6 July XV Swimming Tour around Formentera against cystic fibrosis

Find our more about Respiralia.

UK patient organisation hold annual alpha-1 information day

Alpha-1 Information Day 2014 took place on Saturday 14 June in Solihull, UK. A number of experts, people with alpha, and industry representatives gave interesting and informative presentations.

Taking part in the event were Chris Brown-Martin, a Lung Champion in the 2012 World Spirometry Day campaign, and Shane Fitch from the patient organisation, Lovexair.

Those attending were invited to take part in discussion and influence the future activities of the organisation as they strive for better care and treatment for people living with alpha-1 in the UK.

For more information, either email or visit the Alpha-1 Awareness UK website.

Romanian TB organisation mark World No Tobacco Day

The Romanian Association of Tuberculosis Patients (ARB TB) and the Romanian Society of Pneumology organised a World Spirometry Day testing event to mark World No Tobacco Day.

The event, which was organised in partnership with the Live Smart and the Association of Patients with Respiratory Therapy at Home, took place in Crangasi Park, Bucharest.

During the event members of the public were tested for the level of carbon monoxide in smokers and were also offered counselling on smoking cessation.

Fun activities and competitions using balloons and soap bubbles were also organised for children and were designed to symbolise a healthy body and good lung function.

The event was supported by the University of Pitesti, in the framework of the “Free- Smoking Universities” project, by volunteers, that promotes healthy living, a clean lung and smoking cessation in students.

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