Patient Organisation Round-up: February 2022

Patient organisations have had a busy and exciting start to 2022. Many have launched new initiatives to raise awareness of lung conditions and are producing accessible information for people affected.

FairLife LCC welcomes 2022 with inspiring actions to tackle lung cancer

Three Greek athletes have become new ambassadors for FairLife Lung Cancer Care (FairLife LCC):

  • Ioannis Fountoulis, Olympic champion and captain of the national polo team
  • Byron Kokkalanis, windsurfing Olympic champion
  • Zisis Soulios, Greek cycling champion

The new ambassadors engage in awareness-raising initiatives, carrying the message: “Lung cancer can be beaten!”

FairLife organised the first national creative writing and poster competition entitled “The first tobacco/vape-free generation”. It was aimed at middle and high school students. The initiative is the starting point for a series of activities and collaboration with schools related to the topic of tobacco.

A new fictional character, Luca, is born. The idea is to portray the challenges of lung cancer and the importance of prevention, in a deeply moving way. Luca’s story raises awareness about the active role of both patients and caregivers in every stage of the lung cancer journey. Find out more about Luca.

Pulmonary Fibrosis Trust sees step forward in UK Government commitments after meeting with MP

Chair of the Pulmonary Fibrosis Trust (PF Trust) Peter Bryce met with UK Member of Parliament (MP) Rachel Hopkins to address the issues around pulmonary fibrosis (PF). Rachel Hopkins raised a question in the House of Commons to the Health Secretary Sajid Javid about what steps his department is taking to support research into a cure and to improve diagnosis, support and care for people living with PF.

He responded by acknowledging PF is a major concern; more needs to be done to find a cure and to help sufferers, not just in the UK but globally. He agreed to meet with his officials to see what can be done.

This is a major step forward, and one that the PF Trust has been hoping for. The UK Government is now committed to examine ways of funding research for a cure.

Watch the recording of the discussion in Parliament.

APEPOC presents results of survey on climate change and pollution

The Spanish COPD Association (APEPOC) presents the report of the results of its survey: What does the respiratory community think about the impact of climate change and pollution?

  • 88.7% believe that to improve air quality in cities it is necessary to raise awareness of air pollution and climate change
  • 85.4% would encourage public transport
  • 82.6% would encourage effective recycling and reducing the consumption of materials
  • Only 19.7% of the participants were aware that the European Union’s legal air quality limits are lower than those recommended by the World Health Organization (WHO)

Find out more.

Lovexair celebrates 10th anniversary

The Lovexair Foundation is a global non-profit organisation dedicated to the care, support and guidance of people with respiratory diseases and healthcare professionals. It was founded in 2011 by Shane Fitch, a mother of a young man with Alpha-1 antitrypsin deficiency (AATD). AATD is a genetic condition that increases the risk of developing lung or liver diseases.

Shane said, “In 2021 we renewed our commitment to respiratory health. Our aim is to show how each one of us can make a difference and work for our right to breathe better, by guiding and empowering people to make the best decisions about their health and wellbeing in the digital era.

“We urge people, industry and governments to work together to improve our lives for better health, personal wellbeing and a brighter professional future.”

“Each person has a story to tell – not just words but actions.”

Watch Lovexair’s anniversary message in English or Spanish.

Irish Cancer Society launches lung cancer awareness campaign

The Irish Cancer Society launched its annual lung cancer awareness campaign in January. During the COVID-19 pandemic people have been more hesitant to attend GP appointments. The campaign aimed to highlight the importance of early detection of lung cancer and remind people to get checked.

Find out more.

PHA Europe welcomes new board of directors

The European Pulmonary Hypertension Association (PHA Europe) was due to hold its Annual Pulmonary Hypertension European Conference (APHEC) and Annual General Assembly (AGM). Many people were looking forward to these events. Unfortunately, with the sudden surge of the new COVID-19 variant and various restrictions put in place, these events could no longer take place face-to-face.

As the mandate of the previous board has ended, new elections were made as part of their AGM in mid-January.

PHA Europe is delighted to welcome their new president Eva Otter from Austria.

“For me it is very important to successfully implement projects, to increase the quality of life of PH patients and to give a helping hand for others when needed.

We can do that with all our experience and I promise you ‘to stand still’ is not an option for me. I’m sure together we can move on and continue to make progress, so it is very important to work closely together. […]

One thing is for sure: ‘The task ahead of you is never greater than the strength within you’!” – Eva Otter

See the full new board and the auditors.

Longfibrose works to put more focus on early diagnosis of pulmonary fibrosis in 2022

In 2022, the Dutch Association of Pulmonary Fibrosis Patients (Longfibrose) will pay extra attention to the importance of early diagnosis. Early diagnosis aims to recognise pulmonary fibrosis at an earlier stage. The earlier the diagnosis is made, the sooner the treatment can be started, including medication. This leads to better quality of life and higher expectations.

GAAPP makes best capacity-building webinars available to the public

The Global Allergy and Airways Patient Platform (GAAPP) has made its best capacity-building webinars available for public viewing. Some of the topics include:

  • Video Content Creation
  • Fundamentals of Fundraising
  • Engaging with Government Agencies
  • Social Media for Beginners

The GAAPP Academy Online Library is available at

PAHSSc launches tree planting initiative

The Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) is excited to announce the initiation of a Memorial Forest in collaboration with the Turkish Foundation for Combating Soil Erosion for Reforestation and the Protection of Natural Habitats. This ongoing environmental project will enable people to either plant young trees in memory of their loved ones who have died due to the illnesses represented by the association, or make donations in honor of others to increase forestation.

Aspergillosis Trust has busy few months leading up to World Aspergillosis Day 2022

The last few months have been busy for the Aspergillosis Trust (AT). They have:

  • developed a new website;
  • pushed their selfie campaign once more;
  • asked patients to write small blog posts to share their journeys to diagnosis;
  • produced a video on their new YouTube channel in line with this year’s World Aspergillosis Day (1 February 2022);
  • created a pin badge for people to buy from their website to help promote World Aspergillosis Day:
  • been very active on Twitter and Facebook to promote #WorldAspergillosisDay2022 and to raise awareness for this disease, and have had lots of positive responses to their calls to action; and
  • released their first press release to the general press – one of AT’s co-founders was interviewed and they are awaiting more responses to the call to action.

All in all, the promotion of the charity appears to be going well and is gaining some traction out in the wider world for which they are very grateful.

Fundació Respiralia announces dates for annual swimming fundraiser event

The Respiralia Foundation has confirmed the dates of their famous event that helps them to raise awareness and funds for cystic fibrosis: “Strokes against Cystic Fibrosis in Mallorca”.

Usually the event involves swimming around the island of Formentera. However this year they are moving to Mallorca. It will take place on the first weekend of July. They will post more information soon on Instagram.

FSR holds webinar and researcher is awarded Young Investigator Draft

The Foundation for Sarcoidosis Research (FSR) held a webinar on 24 January 2022: Universal Barriers in Dealing with a Chronic Disease – A Sarcoidosis Perspective. It brought together patients and experts to discuss the universal barriers experienced by chronic disease patients. The recording is now available now on FSR’s YouTube channel.

The FSR Fellowship Grant for the 2020-2022 cycle was awarded to Dr. Shu-Yi Liao – a pulmonologist and an assistant professor at National Jewish Health. Dr. Liao has been selected as one of the top 9 rare disease researchers of the 2022 Young Investigator Draft. The Young Investigator Draft funds collaborative research to positively impact treatments and potential cures for the entire Rare Disease Community.

Find out more.