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Patient organisation round-up, November 2014

Patient organisation round-up, November 2014

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

Registration open for Alpha-1 Global Patient Congress

The Alpha-1 Global group, a team of seven volunteers facilitating a platform for all alpha-1 patient organisations in the world, is inviting registration for their 5th Alpha-1 Global Patient Congress in Bagra, Italy on 9–11 April, 2015.

Find out more and register for the congress.

Night run for cystic fibrosis in Greece

Supporters of the Greek Association for Cystic Fibrosis (CF) took part in the fifth international night marathon in Thessaloniki on 18 October, 2014, raising awareness of the condition and handing out information to visitors.

This follows a highly successful event earlier in the month organised by the association – a two day respiratory physiotherapy course in collaboration with the International Physiotherapy Group for CF, bringing together physiotherapists involved in the care of CF patients, for training.

To mark the European week for CF a blood donation campaign will be launched on 17 November, 2014, aimed at informing the public about the creation of a voluntary blood bank for all CF patients and patients with other chronic diseases, who need blood regularly.

More information can be found on their website.

Asthma management activities in Spain

Members of the national federation of associations of respiratory diseases (FENAER) visited the Ministry of Health on 12 September, 2014, to explore how the expectations and needs of patients, families and carers can be better met. They discussed areas of self-care and self-management for asthma patients; public health literacy; social and emotional support for families and carers; and patient safety.

On 10 October, 2014, FENAER held their second multidisciplinary conference of respiratory medical associations in Malaga in collaboration with ALMERA. Among the topics discussed were the practical management of inhalers, playing sports professionally with asthma, and effective disease control using spirometry.

Read more (in Spanish).

Cycling for COPD in France

Philippe Poncet from Moutiers pedalled a record velodrome track cycling time as part of a FFAAIR COPD event on 12 October, 2014 (pictured above).

Philippe, aged 55, was diagnosed with COPD 8 years ago. His oxygen concentrator, which he needed whilst cycling, was carried by Professor Housset Bruno, President of the French Federation of Pneumology, who had flown in from Paris especially to support Philippe. They were connected by the oxygen hose throughout the race.

Read more (in French)

Lung fibrosis organisation wins Best Patient Organisations Project of the Year in Ireland  

“The ILFA 2,000 Steps a Day Challenge for Lung Fibrosis Patients” project was jointly developed by Irene Byrne, Senior Physiotherapist at Mater Misericordiae University Hospital, Dublin, and Nicola Cassidy from the Irish Lung Fibrosis Association (ILFA).

The challenge aims to encourage patients to adopt a more active lifestyle, in spite of their significant health difficulties, by doing an extra 2,000 steps (roughly 1 mile/1.6 km of walking) on top of their usual amount of walking each day. This has proved to be a safe, effective and achievable home-based exercise solution for lung fibrosis patients, empowering them to take control of their breathlessness.

Learn more about the challenge and the award

UK Annual Asbestos and the Law Conference

The Annual Asbestos and the Law Conference, organised by the Merseyside Asbestos Victim Support Group, took place on 10 October, 2014, in Liverpool, UK.

The conference was attended by asbestos victims and support groups as well as representatives of the Association of British Insurers and solicitors.

Stoptober campaign with British Snoring and Sleep Apnoea Association

The British Snoring and Sleep Apnoea Association joined the NHS Stoptober campaign during October, providing information about the consequences of smoking on sleep disorders, and specifically snoring.

Their “10 things you should know about smoking, snoring and sleep apnoea” list was very popular and attracted an overwhelming amount of responses.

Get more information

Genetic Alliance UK launches second patient charter

On Tuesday 21 October, 2014, at a sell-out event at Great Ormond Street Hospital, Genetic Alliance UK, launched their Charter on NHS England’s commissioning of medicines for rare diseases in front of an audience of expert stakeholders.

Read the Charter.

Northern PCD Day 2014 in the UK

The Primary Ciliary Dyskinesia (PCD) Family Support Group held their first Northern PCD Day on 11 October, 2014, in Bradford.

A total of 16 families got together to share experiences, learn more about the PCD Paediatric Management Service and the PCD Family Support Group and how to manage diet when you have PCD and physiotherapy techniques.

Find out more

First clinical guidance on ataxia-telangiectasia in children published

A group of experts from the A-T Specialist Centre at Nottingham City Hospital, the University of Birmingham and the A-T Society in the UK have published the first-ever clinical guidance document on treating ataxia-telangiectasia (A-T) in children.

A-T is a rare and complex genetic disorder that affects different parts of the body in a number of ways. Although the document has been produced in the UK, the experts believe that the information on treatment is relevant across Europe, particularly in countries where patients do not attend a central clinic for the disorder.

Find out more about the document