Patient organisation round-up, July 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 host annual meeting and networking day in Brussels

The European Federation of Allergies and Airways Diseases Patients Associations (EFA) held its annual meeting (pictured above) on June 16 in Brussels next to the European Parliament at the Radisson Blu EU hotel. 

Three new members were welcomed to EFA: the Association of parents of asthmatic children in Zagreb , COPD Support Ireland and the Latvian Allergy and Asthma Association. Asthma UK also rejoined EFA.

EFA’s total number of member organisations is now 38 members in 24 European countries. In addition, Isabel Saraiva, from the Portuguese organisation RESPIRA was elected as a new EFA Board Member, replacing Lina Buzermanienė.

Following the annual meeting, EFA’s working groups on food allergy, allergy, asthma and COPD held short meetings to discuss EFA’s disease-specific projects.

An introduction to the new European Parliament was also given to encourage members’ confidence to engage with their MEPs, and to use the EFA Manifesto as a tool.

For more information about EFA’s annual meeting visit the website.

Annual Patient Meeting of LAM Action, UK

LAM Action, the UK charity supporting women with lymphangioleiomyomatosis (LAM), held its annual patient meeting in Nottingham on Saturday 7 June.

The main speaker was Dr Sara Booth, founder of the Cambridge Breathlessness Intervention Service, whose talk on managing breathlessness was practical and extremely helpful. Other talks included an update from the researchers funded by LAM Action,and Professor Simon Johnson’s review of the progress being made in LAM research and clinical trials around the world.

The meeting was streamed live, and can be viewed here.

For further information on LAM Action, visit the website or email

Patient focus at the Spanish Pneumology and Thoracic Surgery Congress

La Federación Nacional de Asociacionesde Enfermedades Respiratorias (FENAER) participated in theSpanish Society of Pneumology and Thoracic Surgerys (SEPAR) 47th Congress, held at Bilbao Euskalduna from 6 to 9 June 2014.

As part of the event, tribute was paid to Dr Albert Jovell, who placed patients at the centre of the healthcare system in Spain, giving them more decision-making power in issues concerning their health.

Information on FENAER and its member organisations wasalso available throughout the Congress at their stand in the patients’ area.

UK PCD family day 2014

The PCD Family Support Group (supported by a grant from Jeans for Genes) held their annual meeting and Family Information Day on Saturday, 21 June in Milton Keynes.

The day was a big success with talks on ear, nose and throat management, claiming disability livingallowance and physiotherapy tips. Presentationswere given from Fiona Copeland (Chairman) and Mick Wilkin (Treasurer) on the organisation’s achievements over the last year and plans for 2015. The event was well attended with 50 adults and 12 children.  

A full report of the day can be found on the PCD Family Support Group website.

Asbestos victims demand cure for mesothelioma

The Merseyside and Cheshire Asbestos Victims Support Groups  held their annual Action Mesothelioma Day on Friday 4 July in Liverpool, UK.

The event was designed as a national mesothelioma awareness day with victims and their families taking part in a sponsored dove release in memory of those who have lost their lives or to mesothelioma and other asbestos-related diseases.

Children from a local primary school took part in the release of doves, representing “tomorrow’s workers” and highlighting the continuing importance of health and safety in the workplace.

All proceeds raised on the day were donated to the June Hancock and Mick Knighton mesothelioma research funds, which are dedicated to finding a cure for mesothelioma.

Presentations were given by Dr Michael Sackcloth on the diagnosis and treatment of mesothelioma, and by Fiona Murie on the continuing need for an international ban on the use of asbestos, particularly in third world countries.

For more information visit the website

Spanish organisation swim to raise awareness of cystic fibrosis

Respiralia held their 15th Swimming Tour against cystic fibrosis on 4-6 July.

The event sees swimmers race in relay around the island of Formentera. All proceeds go to Respiralia to help them continue supporting people affected by CF. 

For more information about Respiralia visit the website

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