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Patient organisation round-up: July 2018

Last Update 06/04/2021

Read below to see how patient organisations throughout Europe and beyond have been advocating for lung health in the last month.

Picture: Local politicians and school children in the UK release doves in memory of all those who have lost their lives due to asbestos-related conditions.

Invitation to Global Respiratory Summit on 13 September in Paris

All lung health advocates are invited to attend the 2018 Global Respiratory Summit on Thursday 13 September in Paris. The event is co-hosted by the Global Allergy and Asthma Patient Platform (GAAPP) and COPD Global.

Please contact kwillard@copdfoundation.org to find out more.

Raising awareness of alpha-1 antitrypsin deficiency in Poland

The Polish association of people suffering from alpha-1 antitrypsin deficiency (AATD) recently prepared a short article on the condition and the lives of those that have it. This article was published in the supplement named ‘Taboo diseases’ in one of the biggest Polish daily newspapers, Rzeczpospolita. The association’s “View from the experts” helped to raise the general knowledge about AATD and the challenges faced by patients.

Find out more (in Polish).

Sarcoidosis patients get together in Madrid

On 23 June, the Spanish national association of sarcoidosis patients (Asociación Nacional de Enfermos de Sarcoidosis, ANES) held its 2nd National Members Encounter in Madrid. In the morning, they held their annual meeting and learned more about the condition from two sarcoidosis specialists. In the afternoon, the members enjoyed a sightseeing tour of the Spanish capital.

Representative of the Charity Foundation “Sister Dalila”, Pulmonary Hypertension Ukrainian Rare Disease Association participated in the 13th International PH Conference

The 13th International Pulmonary Hypertension (PH) Conference, “PHinding Your Hope”, was held in Orlando, Florida, USA from 29 June-1 July. There was a varied programme for patients and professionals, including sessions on optimising therapy, nutrition, transplantation and surgery and safe physical activity for people with PH. Each day the conference started with a group ‘chair yoga’ session and patients also took part in a fashion show and karate demonstration.

PHUDRA president Oksana Kulish said: “from the Conference, we received for ourselves valuable knowledge, acquaintances and new friendship. It was very nice to represent Ukraine and to hear about the leading lights of PH medicine”.

Updates from Fundación Respiralia, Spanish Cystic Fibrosis foundation

Fundación Respiralia recently held their annual swimming tour around Formentera with hundreds of participants and volunteers helping to raise awareness of cystic fibrosis.

The foundation is currently offering “Productive Holidays in Mallorca” where people with cystic fibrosis come to their specialist clinic to learn physiotherapy, inhaled treatment techniques and hygiene measures while enjoying a short break in Mallorca.

The organisation’s annual magazine shares updates from all the foundation’s activities over the last year in Spanish and English.

Find out more about the annual swimming tour.

Find out more about the Productive Holidays in Mallorca.

Patient seminar for alpha-1 antitrypsin deficiency in Germany

On 2 June 2018 the first patient seminar on Alpha-1 was held at the Medizinische Hochschule Hannover in Germany. Specialists in the condition shared information with patients and their relatives about the current state of research, while the patient organisation Alpha1 Deutschland gave a lecture on their activities. In addition, there was the opportunity to exchange ideas between patients and professionals. Following positive feedback, a repeat event is planned for the future.

Find out more (in German).

Advocating for asthma patient needs to Irish Parliament

The Asthma Society of Ireland held their annual Pre-Budget submission meeting on 11 July. A list of ‘what people with asthma need’ was presented to all members of parliament and senators attending. Priorities include: substantially reducing the cost of asthma medication, a free annual asthma review with GPs, inhalers available in all schools and clubs, and to reduce the threat of tobacco.

Read the full report.

Summer camp for children with asthma

The second edition of the RESPIRIAMO Aria Nuova summer camp for children with asthma and/or allergies organised by the Italian associations Respiriamo Insieme Onlus and Aria-aaa3 Onlus recently took place. The camp was held in Croatia at the Lječilište Veli Lošinj lung care centre where children aged between 6 and 17 were able to spend time away from pollution in a health facility with high quality standards, share free time with their family and strenghten the relationships of knowledge and support with other peers and their families.

Action Mesothelioma Day pledge to support the UK National Health Service

Asbestos victims support groups called for support for the UK National Health Service (NHS). The decision was taken at their Action Mesothelioma Day where over 120 sufferers and family members gathered.

John Flanagan, Support Officer for Merseyside Asbestos Victims Support Group said: “sufferers of this sinister disease know only too well through their bitter experience the value of the NHS. Especially after diagnosis with this insidious condition, the last thing on their mind should be cost of their care. Sufferers constantly tell us they have only praise and admiration for NHS staff and its supporting services”.

He added that the latest statistics show “a further rise in mesothelioma deaths. A report this year showed that many construction workers believe they have been exposed to the deadly fibres but do not know what to do about it. We need to address this burgeoning problem without delay”.

Aspergillosis Trust raising funds and awareness

The UK Aspergillosis Trust recently launched a range of merchandise to help raise funds and awareness of the fungal lung infection. The Trust has also developed information materials to display in doctors’ practices, pharmacies and hospitals explaining the symptoms of aspergillosis and highlighting the need for earlier diagnosis and referral to a specialist centre in order to improve treatment and outcomes.

Find out more.

Annual Primary Ciliary Dyskinesia Day

The UK Primary Ciliary Dyskinesia (PCD) Family Support Group held their annual PCD Day and AGM on 30 June. This was another fantastic event and a great opportunity for friends and families impacted by PCD to meet and network in an informal and enjoyable setting. It also provided an opportunity to hear talks from leading experts in the field and understand more about the condition, how it is diagnosed, and how it can best be managed on a daily basis.

Find out more.

EU-IPFF publishes an article in Health Europa Quarterly

Carlos Lines, the President of the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF), has prepared an article for Health Europa Quarterly, on the challenges of idiopathic pulmonary fibrosis. This was a major opportunity to raise awareness on this little-known condition and to promote the Federation’s activities and goals, including ensuring timely diagnosis and an equal standard of care across Europe.

Find out more.

Lung Foundation Australia raising awareness of COPD exacerbations

During the winter months in the southern hemisphere, Lung Foundation Australia runs the ‘Have the CHAT’ campaign. It aims to keep people with chronic obstructive pulmonary disease (COPD) well and out of hospital by raising awareness of the symptoms and how to manage an exacerbation.

CHAT is an easy to remember acronym that helps patients and their carers to recognise the symptoms of a COPD flare-up and take action:

Coughing more than usual
Harder to breathe than usual
Any change in sputum (phlegm)
Tired more than usual (less active).

The campaign also equips primary care professionals with the tools and resources they need to keep their patients stay well and out of hospital during winter by encouraging them to complete a simple six step checklist for each patient with COPD.

Find out more.

Updates from the Global Allergy and Asthma Patient Platform

During the European Academy of Allergy and Clinical Immunology (EAACI) annual congress in Munich, Global Allergy and Asthma Patient Platform (GAAPP) member organisations met for a scientific meeting. Speakers included current president of EAACI, Ioana Agache, talking about severe allergic and severe eosinophilic asthma, and past president of EAACI, Antonella Muraro, discussing the role of allergy in atopic eczema.

An initial meeting of a GAAPP-led initiative for a severe asthma working group took place on 13 June in London. The objective is to develop and disseminate a global patient-centered definition of severe asthma. The working group is implementing a four-step programme entitled: Patient Understanding Leading to Severe Asthma Referral (PULSAR). The group is made up of patient group representatives, expert patients, specialist physicians, primary care physicians, a clinical nurse specialist and pharmaceutical medical experts. This initial meeting was an important step closer to driving optimal management strategies for severe asthma by enabling patients to recognise their asthma as severe, and the large variation in terminology used by health care professionals, pharmaceutical companies and patients. 

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