News

Patient Organisation Round-up: June 2024

Catch up on the latest news and activities from patient organisations across Europe.

Aspergillosis Trust honours co-founder Jill Fairweather
Aspergillosis Trust honours co-founder Jill Fairweather

Aspergillosis Trust honours co-founder Jill Fairweather

The Aspergillosis Trust suffered a huge loss this month when they lost their co-founder and dear friend Jill Fairweather. Jill’s journey with aspergillosis was a long and often difficult one yet her unwavering dedication to helping and supporting others never ebbed. Through the Aspergillosis Trust Support Group, Jill helped so many people. Her kindness and compassion were evident with everyone she dealt with.  For many she undoubtedly helped to improve their quality of life. She was passionate about raising awareness of this disease and worked tirelessly to educate the public and health care professionals. She had a gift for getting things done and her contributions within our community were far reaching and will live on in everything we do. Jill paved the way for us, all we have to do now is honour her legacy and continue the important work she started. Thank you for everything Jill, we hope you are eating cake!


Pete the Puffling’s Brave Adventure
Pete the Puffling’s Brave Adventure

Pete the Puffling’s Brave Adventure

Pulmonary Fibrosis Northern Ireland have published an exciting new book to help explain what pulmonary fibrosis is and how it impacts those diagnosed to younger members of the family. The book is a beautiful story about a young Puffling who loves to go fishing with his grandfather every weekend. Unfortunately, Pete’s grandfather Percy finds it increasingly difficult to make the fishing trips and is diagnosed with pulmonary fibrosis. The story delicately explains how Pete can help his grandfather through his journey with pulmonary fibrosis. The book is beautifully written and illustrated and will help so many families when they have to explain how their condition is affecting them. The book was officially launched on 14 June. Pulmonary Fibrosis NI are also proud to announce that they have purchased a large property on Lough Erne Golf Resort in Co Fermanagh which will be used to provide respite for pulmonary fibrosis sufferers. This will be the second respite to be bought by them.


MNT Mon Poumon Mon Air - Annual Congress Alliance Maladies Rares
MNT Mon Poumon Mon Air - Annual Congress Alliance Maladies Rares

MNT Mon Poumon Mon Air - Annual Congress Alliance Maladies Rares

For the first time, the association MNT Mon Poumon Mon Air participated in the annual Congress of Alliance Maladies Rares — the French Alliance for Rare Diseases. The admitted associations in 2023 had to introduce themselves in front of the attendees of the Congress. They talked about the disease they represent and the strategy of their patient organisation.


PAHSSc celebrate World Pulmonary Hypertension Day
PAHSSc celebrate World Pulmonary Hypertension Day

PAHSSc celebrate World Pulmonary Hypertension Day

On World Pulmonary Hypertension Day, 5 May, scientific associations and patient associations came together for the first time and organised the Bocce Petanque Games Hand in Hand for Health event at Gazi University. That same evening, healthcare professionals wrote and performed a theatre play for their patients. The Turkish Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) would like to thank Serdar Kulaand who supported the awareness study. The messages conveyed in the play staged with director Tamer Aykut were also great for raising awareness of pulmonary arterial hypertension.


Light Up for World Pneumonia Day
Light Up for World Pneumonia Day

Light Up for World Pneumonia Day

Pneumonia is an infectious disease that killed 2.1 million people globally within 2021 alone, yet this could be prevented. World Pneumonia Day is on 12 November and NEUMOAI are encouraging people to join the worldwide Pneumolight campaign and help to light up landmarks around the world in blue. To raise awareness of pneumonia and how it impacts health, the Worldwide Pneumonia Awareness Campaign is inviting local, national and international authorities to light up monuments in the colour blue between 8pm and 10pm in their local time. Join the 200 monuments in 108 cities in 32 countries worldwide that will be illuminated to support the Pneumolight 2024 campaign. If you are interested in raising awareness of pneumonia by lighting up a monument in blue within your city, contact catiacilloniz@yahoo.com 


Canadian Pulmonary Fibrosis Foundation release an educational video around pulmonary fibrosis
Canadian Pulmonary Fibrosis Foundation release an educational video around pulmonary fibrosis

Canadian Pulmonary Fibrosis Foundation release an educational video around pulmonary fibrosis

Pulmonary Fibrosis (PF) is a common term used to describe a large family of diseases that cause inflammation and scarring in the lungs. If you or someone you care about is living with pulmonary fibrosis, the Canadian Pulmonary Fibrosis Foundation have released a must-watch video. It can be overwhelming to receive a pulmonary fibrosis diagnosis, and until you become involved with the pulmonary fibrosis community or clinic, it can be tough to learn about this disease. In this educational video presented by Canadian Pulmonary Fibrosis Foundation, Dr Charlene Fell explains, in an easy-to-understand way, what pulmonary fibrosis is, what you can expect, and how to manage the disease so you can live life as fully as possible. Watch their video for a quick overview and share it with your friends and family to help build awareness for pulmonary fibrosis. 


APEPOC ran a webinar on smoking cessation
APEPOC ran a webinar on smoking cessation

APEPOC ran a webinar on smoking cessation

On Tuesday 11 June, APEPOC hosted a webinar on smoking cessation. To celebrate World No Tobacco Day, APEPOC’s smoking cessation advisor Dr José Luis Díaz Maroto reviewed the last 50 years in smoking prevention, and APEPOC analysed the current situation of their COPD patients, their concerns and unmet needs. 


Chronic Rhinosinusitis Patient Empowerment Guide by EUFOREA
Chronic Rhinosinusitis Patient Empowerment Guide by EUFOREA

Chronic Rhinosinusitis Patient Empowerment Guide by EUFOREA

EUFOREA announced the release of its new patient guide on Chronic Rhinosinusitis including Chronic Rhinosinusitis with Nasal Polyps Syndrome (CRSwNP). EUFOREA have produced a comprehensive guide to provide patients with essential information and navigate their CRSwNP journey effectively. The guide includes: an overview of common symptoms associated with CRSwNP, a breakdown and evaluation of different treatment options (including new therapies like biologics), insights into diagnostic tests used to diagnose CRSwNP and tips to ensure effective communication with your healthcare provider. Empower yourself with knowledge and take control of your CRSwNP management journey. 


Respiriamo Insieme launch their “PerCORSA di Salute” and twin with Sevilla Respira’s “Ponte en mi Lugar”
Respiriamo Insieme launch their “PerCORSA di Salute” and twin with Sevilla Respira’s “Ponte en mi Lugar”

Respiriamo Insieme launch their “PerCORSA di Salute” and twin with Sevilla Respira’s “Ponte en mi Lugar”

Respiriamo Insieme has launched a new 2024 project called “PerCORSA di Salute” (playing with the term “Percorsi”, which means “paths” and “Corsa”, meaning “race”). The project aims to raise awareness of chronic respiratory diseases, and the people they impact, including patients, their families and the general population. The project is spread over 11 days at selected hospital centres throughout Italy. Each of the PerCORSA days includes information about prevention, lung tests and sports activities for everybody.

The project was launched on 7 May 2024 in Verona in the Veneto region. It has now moved on to Rozzano and Milan in the Lombardy region. The next three events with free tests, educational conferences and a race will take place in the Piedmont region. To mark the launch of “PerCORSA di Salute”, Respiriamo Insieme also proudly announced its twinning with the Spanish patient organisation Sevilla Respira,  and its “Ponte en mi Lugar” project. This project has common goals of awareness, prevention and information on respiratory diseases. Thus, by working together the organisations spread a wider and stronger message of partnership and patient advocacy beyond boundaries.


Asthma + Lung UK are asking election candidates to stand up for lung health
Asthma + Lung UK are asking election candidates to stand up for lung health

Asthma + Lung UK are asking election candidates to stand up for lung health

Ahead of the UK’s general election on 4 July, Asthma + Lung UK are calling on all political parties to take lung health seriously.

Decades of government inaction have left millions of people waiting for a diagnosis or struggling to access the care they need. Because lung health research has never been a priority, progress towards developing new treatments has stood still for decades. Air pollution is making matters worse, having a deadly impact on everyone’s lung health. Asthma + Lung UK wants the next government to set bold new diagnosis targets, invest in lung health research and tackle toxic air.

Candidates are more likely to listen when the message comes from local people. If you want to help demand change, you can write to your election candidates and ask them to pledge their support for lung health using Asthma + Lung UK’s form.


PHURDA is implementing Respiro Vigilance Project to fight respiratory diseases
PHURDA is implementing Respiro Vigilance Project to fight respiratory diseases

PHURDA is implementing Respiro Vigilance Project to fight respiratory diseases

As part of the implementation of the Respiro Vigilance Project, the Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA) held an event in the western part of Ukraine regarding the early detection of respiratory diseases, improving awareness and vaccination. Several activities were held in which volunteers and children were involved as well as medical specialists and institutions that work in this field. Within the framework of this project, PHURDA understands how important such events are for confronting pulmonary hypertension and other respiratory diseases. This event is one of the points of the project, which PHURDA implements with the support of GAAPP and other partner organisations. They are extremely grateful that in a time of war and taking into account the challenges they now face, they are able to take these steps. An understanding and support are extremely important there in such a difficult time.


Atopic Dictionary created
Atopic Dictionary created

Atopic Dictionary created

The Atopic Dictionary is an online resource designed to offer detailed information about the medical terms that are included in the medical report that a patient often gets after the doctor’s appointment. The platform aims to bridge the knowledge gap between patients/caregivers and medical professionals, to provide better understanding of the information provided by the doctor, and therefore help patients manage their disease better. This tool was created by the Atopic Dermatitis Society of Slovenia. Since they mostly work with atopic diseases, the dictionary focuses on medical terms related to atopic diseases (Atopic Dermatitis, Allergies, Asthma), but in the future, they will expand the disease areas in which different terms are used.