Patient organisation round-up, August 2016

Members of our patient organisation network have been busy raising awareness of lung health issues during the last month. Find out more about some of these activities.

Picture: Lovexair’s Happy Air initiative

Cystic Fibrosis conference in Skopje

The South Eastern European Cystic Fibrosis (CF) Conference, organised by CF Europe, is taking place in Skopje on 29 and 30 September.

The conference is open to healthcare professionals and patients from Macedonia and surrounding countries. International experts from all over Europe will attend and give an update on research and care in the field of CF in Europe.

The conference is free to attend. You can register for the conference here.

Read more.

New European project on chronic pain

Active Citizenship Network has launched their new project – “EU Civic Prize on Chronic Pain –  Collecting Good Practices”. The aim is to give evidence of existing good practices in European countries in the struggle against pain.

Best practices will be identified by different stakeholders, such as patients’ associations, healthcare professionals, private and public hospitals and universities. The project will showcase what this community can offer in terms of good practice and experiences which are useful in raising awareness about the condition, enhancing the body of knowledge of positive cases and success, and strengthening commitment to this topic.

Read more.

17th Swimming tour around the island of Formentera

Fundacion Respiralia, the Spanish CF patient organisation, saw 240 swimmers enjoy the crystal clear waters of Formentera in an atmosphere of solidarity and companionship on 1-3 July to raise awareness of CF.

This year seven young people with CF took part in the event, as swimmers and volunteers.

Read more.

Awareness day for pulmonary arterial hypertension in Minsk

More than 70 people attended a pulmonary arterial hypertension (PAH) public awareness day in the centre of Minsk on 4 July. The event, organised by PAH Belarus, included patient information materials and a hip hop flash mob. This important event has helped raise awareness of the problems people face with the healthcare system in Belarus.

Read more (in Russian).

New patient information leaflet on sarcoidosis

The Swiss Sarcoidosis Association has published a new patient information leaflet, giving information about sarcoidosis. The information is currently available on the website in GermanFrench and English. The Italian version will be available soon.

Read more (in French, German and English).

Assessing the psychological needs of people with tuberculosis

ARB-TB Romania is currently working on research into the psychological needs, especially in terms of counselling, of people with tuberculosis (TB). The study concentrates on the treatment period and the time after treatment has been completed.

Read more.

Happy Air initiative launched in Spain

Lovexair Foundation in Spain recently launched “HappyAir “, an initiative that aims to promote, prevent and provide ongoing support to the community of people affected by lung disease through collaborating pharmacies and their newly-established educator network.

Read more (in Spanish).

Summer science exhibition on Killer Fungus

The Fungal Infection Trust UK got excited about the Royal Society’s summer science exhibition: Killer Fungus, which took place in July in London. There were hands-on exhibits to learn all about how different parts of the human body are affected by different fungus species.

Read more.

UK sarcoidosis newsletter

SILA, the UK sarcoidosis charity, has published their latest newsletter. SILA now has five official support groups in the UK, and is looking forward to setting up a further six. It is one of the world’s smallest sarcoidosis charities, and yet it is among the biggest charity funders of research in the field.

Read more.

Register for Sleep Apnoea Trust annual conference in October

SATA, the Sleep Apnoea Trust in the UK is inviting everyone interested to their Sleep Apnoea Trust annual conference and AGM at the John Radcliffe Hospital Academic Centre in Oxford in October. SATA’s membership is rapidly growing and it expects that the conference – a totally sleep apnoea-focused patient day – will be fully booked this year.

Read more.

Global hand washing day celebrated in Pakistan to beat infections

The Helping Hand Foundation in Pakistan is preparing to celebrate Global Hand Washing Day on 15 October. The theme this year will be “Raise a hand for hygiene” and will help raise awareness of the importance of hand hygiene for the health and wellbeing of the population.

Read more.

Correct use of inhalers

The National Asthma Council of Australia has started their winter campaign on how to use inhalers correctly. This includes information on a number of different types of inhalers, such as nasal inhalers.

Read more

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