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Patient organisation round-up, January 2017

Patient organisation round-up, January 2017

The last month has been very busy for patient organisations in Europe. Read below to see how they have been promoting and campaigning for lung health.

Action for IIisua

ARB-TB, the Romanian patients’ association for people with tuberculosis (TB), organised a social event for children with TB at the sanatorium in IIiusa in December (pictured above).

Thanks to kind donors, the children received presents and enjoyed their day. The event was supported by volunteers and a Romanian TV channel.

Read more (in Romanian).

Patient involved in training of medical students

Tone Skramstad Brække, the leader of Alpha-1 Norway, recently took part in the training of medical students at the University of Oslo. The students were learning how to communicate with patients and Tone was speaking to them in small groups of 30.

She used the opportunity to help the students understand what good communication with patients is, and introduced them to the rare condition Alpha-1. Both Tone and the medical students enjoyed the training session.

Read more (in Norwegian).

How good is the air you breathe?

If you live in the Netherlands, there is now a quick way to check the air quality in your area on the Longfonds website by typing in your postcode. 

Longfonds is also currently working on getting the government to agree on and implement a national air quality plan.

Read more (in Dutch).

New film on Alpha-1

The Alpha-1 Foundation Ireland launched an educational film on the condition at their annual Alpha-1 conference last October. The film gives information about Alpha-1 and describes the patient experience. It was funded by the Health Research Board in Ireland.

Watch the film

Italian Sleep apnoea congress

On 3 December, the Associazione Italiana Pazienti con Apnee del Sonno-ONLUS attended a national congress on sleep apnoea in Rome. Special guest, actor Lino Banfi, spoke about having sleep apnoea following the publication of his book, which details his experience.

Read more (in Italian).

Winter assessment to stay warm for patients in London

Islington Council in London is working with Westminster Council to roll out their successful Seasonal Health Interventions Network (SHINE) scheme to any vulnerable residents in the area. A referral to SHINE means that people will be assessed over the phone for many free services to help them stay safe and warm in their home and help reduce their energy and water bills.

Read more.

Running for Pulmonary Fibrosis

Nick Ashill from the UK will be running across America to raise funds for the Pulmonary Fibrosis Trust UK. You can follow his progress.

Read more.

Videos on how to use inhalers

The National Asthma Council of Australia has published two new films on their website on the use of inhalers, including nasal inhalers.

Read more.

Alpha-1 Patient Congress

Alpha-1 Global is organising its 6th Global Patient Congress on 6-8 April in Lisbon, Portugal. You can register here.

Read more.