Patient organisation round-up, February 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 awaresness of respiratory health:

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.

Irish Cancer Society launches Lung Cancer Awareness Month

The Irish Lung Society launched their Lung Cancer Awareness Month campaign to remind the public to be aware of the signs and symptoms of lung cancer.

Recent research by Ipsos MORI on behalf of the Global Lung Cancer Coalition investigated awareness of the symptoms of lung cancer in 21 countries worldwide. The report showed that 91% of Irish people can name at least one symptom of lung cancer. However Irish females rank amongst the highest in Europe for incidence, with the number of new cases diagnosed 55 per cent higher than the EU average – 4th highest in Europe after Denmark, Hungary and Netherlands.

For information and support in Ireland, visit the Irish Cancer Society website.

Read the report on the Global Lung Cancer Coalition’s survey.

New partnership to prioritise mesothelioma treatment uncertainties

A ‘Priority Setting Partnership’ (PSP), set up by the James Lind Alliance (JLA) to identify and prioritise unanswered questions about mesothelioma treatments, was launched in December 2013. This UK initiative will publish a list of ‘top ten’ questions that UK-based patients, carers and healthcare professionals would like to see answered by research. A survey will be sent out asking people affected by mesothelioma what they think the uncertainties are around diagnosis, treatment and care.
If you are based in the UK, and would like to be notified when the survey becomes available please join the mailing list via the website.

Obliterative Bronchiolitis UK organisation support Rare Disease Day

1 in 17 people will be affected by a rare disease at some point in their life, 75% of which are children.

Breathtakers OB Trust is the only UK charity that supports children with Obliterative Bronchiolitis (OB), a rare and life limiting lung disease. Support them on Rare Disease Day, Friday 28 February, by wearing an orange item of clothing and donating £1 to Breathtakers OB Trust.

For information contact

Alpha-1 group to hold first Scottish information day

Alpha-1 UK Support Group will be holding their first Scottish Social Gathering and Information Day on Saturday 29 March in Dundee.

The Alpha-1 Alliance will be speaking about the new campaign for access to treatment and specialised services in Scotland, and providing information on how you can get involved. There will also be a series of talks by medical professionals and a private guided tour of the Antarctic research ship, RSS Discovery.

Visit the website for more information and to register for the event.

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