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Patient organisation round-up: August 2020

Last Update 06/04/2021

Over the past few months, patient organisations across Europe have been launching campaigns to raise awareness of different lung conditions among the public. Others have started new projects to provide information and offer physical and emotional support for people affected by lung conditions.

Image: Artwork for the “I breathe for you” public awareness campaign as part of the global initiative “Talking about lung cancer”, launched by the Croatian Association of Lung Cancer Patients “Jedra” on World Lung Cancer Day.

Association of Lung Cancer Patients “Jedra” launches new campaign I breathe for you

As part of the global initiative Talking about lung cancer, the Croatian Association of Lung Cancer Patients “Jedra” together with the Coalition of Health Associations has launched another educational campaign called I breathe for you on World Lung Cancer Day (1 September). The goal is to raise public awareness of the importance of breathing well for healthy lungs. In video lectures, healthcare professionals talk about the prevention, diagnosis and treatment of lung cancer. In online workshops, respiratory physiotherapists teach patients and the public about proper breathing techniques to maintain good lung function. Also, campaign ambassadors from Olympic athletes, opera singers and deaf people who play the violin explain how important proper breathing is to achieve the best results.

PHA Europe collects over 1000 responses worldwide from PHCARE COVID survey

The Pulmonary Hypertension Association European (PHA Europe), with the support of ERN-Lung, ran a very successful COVID-19 questionnaire: PHCARE COVID survey. It was supported by the European Respiratory Society (ERS), ERS-PHAROS (an ERS clinical research collaboration on severe PH) and ELF.

The survey got over 1,000 responses from 40 countries all over the world. The data analysis is currently ongoing. The aim is to provide valuable input to understand the effects of the COVID-19 pandemic on people living with PH and to help them to prepare for future challenges.

Action for Pulmonary Fibrosis gets IPF patients priority for pulmonary function tests

Action for Pulmonary Fibrosis (APF) is delighted that NHS England has decided, in light of the COVID-19 pandemic, to give priority to pulmonary function tests (PFT) to people with early stage idiopathic pulmonary fibrosis (IPF). APF wrote to Matt Hancock, Secretary of State for Health and Social Care, on 26 May to ask for his help in ensuring timely access to tests for IPF patients to start treatment earlier. APF would like to thank colleagues at the NHS for introducing this change so quickly.

Find out more.

FFAAIR member publishes a book on the history of asthma

Liliya Belenko Gentet, an active member of the French Federation of Associations of Patients with Respiratory Insufficiency or Handicap (FFAAIR), has published a book: L’histoire de l’asthme pour le soin des patients (English: The history of asthma for patient care). People with asthma have to learn a lot about their condition and apply the knowledge to everyday life to take care of themselves. The book focuses on helping asthma patients to understand more about the condition and the history behind it, such as the development of treatments. It is aimed at healthcare professionals and medical students as well as patients.

PAHSSc holds successful patient information day

For World Scleroderma Day, the Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) held a virtual patient information day split into two parts – one focusing on young patients and the other on adults. They discussed common problems faced, prognosis and new developments. Both parts were well attended. The day ended with the illumination of the bridge that connects Europe and Asia in the blue Scleroderma colour.

Find out more

Association de Pacientes con EPOC welcomes environmental medical advisor to the organisation

Environmental pollution is an important risk factor for respiratory patients. For this reason, the Spanish Association of COPD Patients (APEPOC) announced the incorporation of an environmental medical advisor, Dr. Carlos Cabrera, pulmonologist from the University Hospital Dr. Negrín (Las Palmas de Gran Canaria). APEPOC considers that it is important to educate the need to promote a respectful attitude towards the environment to reduce the overall amount of emissions causing air pollution.

NEUMOAI prepares for global campaign and conference on World Pneumonia Day

The Association for Information and Support to Patients and Families with Pneumonia (NEUMOAI) is working on preparing the World Pneumonia Awareness Campaign and the global conference for pneumonia, both taking place on 12 November on World Pneumonia Day. The objective of this year’s campaign is to raise awareness of pneumonia. NEUMOAI will illuminate monuments around the world in blue. Their campaign started in April and so far there are 31 countries that support them and more than 130 monuments around the world will light up in support of the fight against pneumonia. The global conference for pneumonia aims to discuss the important points in the management of pneumonia and its prevention. It will be held live and will be broadcast on YouTube, where the presidents of the main scientific societies of respiratory and infectious diseases will speak.

Unione Trapiantati Polmone di Padova ODV organises music event Night of Breath

The Padua Lung Transplant Union has organised an event called “Notte di respiri” (English: Night of Breath). Following local safety guidance, it will take place in Forlì on the evening of 5 September 2020. The event is a musical show that focuses on breathing, raises awareness of lung health and gives a voice to people affected by lung disease. The event will be followed by a medical conference on 6 September that will touch all aspects of interstitial lung diseases including the impact of the COVID-19 pandemic.

Both the events will be streamed online on the organisation’s YouTube channel and there will be the possibility to interact with speakers at the conference.

For more information about watching and/or taking part, visit www.nottedirespiri.com or contact presidente@oltrelamalattia.it.

Bulgarian Society of Patients with Pulmonary Hypertension launches new project Women with PH

The Bulgarian Society of Patients with Pulmonary Hypertension (BSPPH) has been working in collaboration with the Pulmonary Hypertension association Latvia on a project called Women with PH. 80% of people with pulmonary hypertension (PH) are women, and the condition can cause serious risks to pregnant women. PH is a complex condition, so it has a big impact on mental health, as well as physical. The aim of the project is to provide information and emotional support for women with PH about living well with PH in order to help their mental wellbeing and improve their overall quality of life.

BreatheEasy Westminster Support Group supports shielding patients with phone calls

British Lung Foundation support group, BreatheEasy Westminster, has spent recent times communicating by email and text messaging to local community support organisations and their members, as they have been unable to meet up due to the COVID-19 pandemic. Most respiratory members are over 70 years old and have been shielding. After little response, the support group has started to communicate by phone to over 200 people, which has been very well appreciated and had positive results. Many members have received help with getting their food and medical supplies, all while making new friends.

Global Allergy & Airways Patient Platform to hold respiratory summit and host weekly webinars

The Global Allergy & Airways Patient Platform (GAAPP) will be holding their third annual Global Respiratory Summit on Thursday 10 September 2020. This year it will be a 3-hour virtual meeting. The details can be found on their website: https://gaapp.org/

GAAPP is excited to announce that they will be hosting weekly capacity building webinars throughout the months of September through November on each Thursday at 10:00 EST. The webinar content will be offered in English and Spanish. The details can be found on their website: https://gaapp.org/

On 8 July, GAAPP held a webinar on the environmental impact of respiratory medicines. Dr. John Bell from AstraZeneca delivered a presentation on why a range of inhaler devices are important in respiratory medicine, the importance of shared decision making and current external pressures in the European Union regarding pMDI inhalers. GAAPP will be working on a collective consensus statement with other EU organisation members regarding these decisions.

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