Patient organisation round-up: February 2021

Patient organisations have had a busy start to 2021. Here you can find out about a range of activities and projects being carried out and launched so far this year, including webinars, publications, information resources and more.

Cystic fibrosis news

Hellenic Cystic Fibrosis Association President becomes Vice President of CF Europe after major act to urge Greek government to introduce new treatment for cystic fibrosis patients

The President of Hellenic Cystic Fibrosis Association (HCFA) in Greece, Dimitris Kontopidis, has been elected as the new Vice President of Cystic Fibrosis Europe for the next three years. 

Last November, Dimitris  took a historical stand; he declined the offer of a lung transplant that he had been awaiting for two years, in order to urge the government to make the new cystic fibrosis transmembrane conductance regulator (CFTR) therapy ‘Trikafta’ available in Greece. This therapy was approved by the US Food and Drug Administration (FDA) in October 2020.

The Greek Minister of Health responded to Dimitris’ action immediately; in a press conference he invited pharmaceutical organisations to come forward and negotiate the introduction of the treatment. Today more than 40 patients in crucial conditions have received the new therapy, saving their lives. 

With his election in CF Europe, HCFA hopes that Dimitris will play an important role in equal access to new therapies across Europe.

Respiralia Foundation launches ‘Informative Capsules’ initiative

One of the main goals of Fundació Respiralia for this year is to share more information about cystic fibrosis (CF) with their community. They are calling this initiative ‘Informative capsules’. They are doing this by sharing videos on their platforms twice a month, which involve interviewing people with CF and healthcare professionals who treat the condition.

Watch the interview about Trikafta / Kaftrio with Alba, a woman with cystic fibrosis from the Respiralia Foundation.

Watch Cystic Fibrosis Information Capsule: The Glottis in Autogenic Drainage Technique

Lung cancer news

LuCE publishes report on psychological and social impact of lung cancer

Lung Cancer Europe (LuCE) recently published a report on ‘Psychological and social impact of lung cancer’. Together with the full report, they have published a set of infographics and an executive summary in several languages, which they are promoting it for  use in the European lung cancer community.

Read the report and access the infographics.

WALCE launches new programme to help patients access clinical trials

Women Against Lung Cancer in Europe (WALCE) has launched a new programme aimed to help patients with advanced non-small-cell lung carcinoma (NSCLC) in Europe to access molecular testing and be part of clinical trials.

The programme is called EPROPA (European Program for ROutine testing of Patients with Advanced lung cancer). The main goal is to generate a free-of-charge molecular screening platform for tumour characterisation, in order to increase the detection of oncogenic drivers (frequent or rare) in NSCLC patients. At the same time, EPROPA will enhance patients’ access to biomarker-driven clinical trials.

The molecular test results may give a patient the opportunity to enter into a dedicated clinical trial. If the patient accepts it, EPROPA will help them to reach the closest site where the study is available, covering for the costs of journey and accommodation for the patient and one caregiver during the experimental treatment. 

Find out more.

FairLife Lung Cancer Care joins ELF Patient Organisation Network and creates two videos

FairLife Lung Cancer Care has recently joined the ELF Patient Organisation Network. It is the first organisation in Greece dedicated to lung cancer. Their mission is to raise awareness of lung cancer prevention, to reduce late diagnosis through understanding and education, to support patient access to effective treatment and clinical trials, and to help improve quality of life for as long as possible.

Prof. Georgia Hardavella, who is the past Chair of the ELF Professional Advisory Committee, is part of the FairLife scientific team. Recently they worked with her on a video about lung cancer screening (with English subtitles) which was uploaded on their YouTube and Facebook page. They also issued a press release for the Greek media. Watch the video.

Another video they have created is of FairLife Ambassador Anastasia Gerolimatou, who is 82 years old and the oldest wind-surfer in the world, according to the Guinness World Records. In the video she talks about the importance of exercise and nature for the lungs, and how important it is to get your lungs checked, after she sadly lost her brother-in-law to lung cancer. Watch the video.

Pulmonary hypertension news

PHA Europe publishes winter edition of Mariposa Journal

Pulmonary Hypertension Association Europe (PHA Europe) has published the winter edition of their journal, Mariposa. This issue covers all the activities from PHA Europe and its member organisations over the past year. Despite the restrictions due to the COVID-19 pandemic, PHA Europe and its members continued to work to support people affected by pulmonary hypertension (PH). They are proud of the activities and achievements they managed to carry out and how well PH is positioned among the rare diseases.

Read the Mariposa journal.

PAHSSc shares patient stories and holds monthly family reunions

Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc) has been posting patient experiences on their Instagram (@pahsscdernegi) entitled, “Living with Scleroderma”, “Living with Hypertension”, “A kiss of life with transplant from a living person”, “The waiting period of lung transplant and process after transplant”.

They have started doing regular ‘family reunions’ with members every second Saturday of the month. In the last meeting, members shared plans for the future, ongoing activities, and expressed the desire for report presentations to be made available following attendance in informative sessions.

On 20 January, PAHSSc members commemorated Şamil Hamidullah, the founder member of the Association.

Read more of PAHSSc’s news.

Pulmonary fibrosis news

EU-IPFF launches new website and opens registration for European Pulmonary Fibrosis Patient Summit

The European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) has launched its updated website (, which went live on the 1 February 2021. Its launch also saw the opening of registrations for the 1st Virtual European Pulmonary Fibrosis Patient Summit, which will take place on 23–25 April 2021. Registration is free and the summit will feature world experts and patients speaking on research, policy and self-care.

EU-IPFF is a federation of patient organisations from across Europe committed to providing a united voice for families impacted by pulmonary fibrosis, a group of rare respiratory diseases. The website has been updated to provide information in a user-friendly way on pulmonary fibrosis, and the work and partnerships of EU-IPFF. It also features a constantly updated and easy-to-use Clinical Trials Finder.

Pulmonary Fibrosis Trust publishes results from patient survey

The Pulmonary Fibrosis Trust UK recently conducted a patient and carer survey to gain a better insight into the real-life impact that the COVID-19 pandemic has had on people affected by pulmonary fibrosis (PF) in the UK. Some of the key findings included the following:

  • 37.2% of PF patients had their exercise and education programmes (pulmonary rehabilitation) halted since the start of the pandemic.
  • 82% had medical appointments cancelled due to the pandemic – and 49.3% claimed their health had worsened because of missing appointments.
  • 48.3% said it took six months or more to diagnose their condition.

PF Trust is calling for further education of the symptoms of pulmonary fibrosis among doctors and the general public, as well as universal access to pulmonary rehabilitation and practical equipment.

Read the full results from the survey.

Other lung conditions

Italian Bronchiectasis Association holds nine free webinars between January and April

Associazione Italiana Bronchiettasie (AIB) held their first webinar of 2021, which focused on psychological well-being: Let’s take care of ourselves, managing stress in the time of COVID-19 – AIB Webinar

Prof. Francesco Pagnini, clinical psychologist and Professor at University Cattolica del Sacro Cuore Milan, joined to talk about managing stress during a pandemic, which causes additional concerns for people with chronic conditions.

Watch the recording of the webinar (in Italian)

AIB organised eight more free webinars to take place between 4 February – 29 April, which aim to help people with bronchiectasis know how to self-manage their condition during COVID-19 times.

Access the list of webinars and register to join.

NEUMOAI President explains the PneumoLight campaign in a new video

Asociación de Apoyo e Información a Familiares y Pacientes con Neumonía (NEUMOAI) prepared a video where NEUMOAI President Dr Catia Cilloniz explains what the World PneumoLight Pneumonia Awareness Campaign is and why it is important to educate and raise awareness about pneumonia.

Watch the full video.

SarcoidosisUK answers questions about COVID-19 vaccines

SarcoidosisUK has been working hard to identify specific advice about COVID-19 vaccinations for people with sarcoidosis. With the help of the SarcoidosisUK Clinical Board, the organisation has created a vaccination FAQ (Frequently Asked Questions) page which answers questions put to them by people affected by sarcoidosis. There is a form at the bottom of the FAQ where people can submit additional questions. Visit the FAQ page.

SarcoidosisUK also hosted a live Q&A (Question and Answer) session with Clinical Board member Dr Robina, consultant in respiratory medicine at Hammersmith Hospital, and bioengineer Dr Anna Blakney, who is part of a team developing a COVID-19 vaccine at Imperial College London. This was their ninth COVID-19 Q&A video and it answers important questions about vaccines. Watch the Q&A.

Lovexair holds webinar and Q&A about COVID-19 vaccines

Lovexair Foundation has been working to provide reliable scientific information about the roll-out of vaccines against COVID-19, to try and reassure people who lack trust or are concerned about the vaccines.

The Foundation recently held an online webinar for their patient communities, networks and healthcare professionals. It was hosted by Dr Esther Barreiro, pulmonary physician and translational research expert at Hospital del Mar, Barcelona, Spain. More than 80 people joined the webinar from across Ibero-American communities, to find out more about the current vaccines, safety and the science behind them. It included a Q&A session to answer people’s questions and concerns, and to explain why getting the vaccine is now so important, especially for those who are affected by underlying conditions. 

Watch the webinar in Spanish.

Former PCD Family Support Group Chair awarded with British Empire Medal

The former Chair of PCD (Primary Ciliary Dyskinesia) Family Support Group, Fiona Copeland, was awarded a British Empire Medal (BEM) in the Queen’s New Year’s Honours list, for her tireless work for the Support Group to support families affected by PCD.

Read the press release.

Tuberculosis Europe Coalition calls for nominations for new Board Member

TB Europe Coalition (TBEC) is calling for nominations of candidates for the election to the second TBEC Board. The new Board member will play an active role in shaping the response to TB in the WHO Europe Region.

Find out more.

Aspergillosis Trust holds Seflie campaign for World Aspergillosis Day

Aspergillosis Trust (AT) was once again heavily involved in World Aspergillosis Day on 1 February 2021. They held their ‘Selfie’ campaign to raise awareness of this condition. Lots of people got involved in the campaign by submitting photos of themselves holding up a card saying ‘I Support The Aspergillosis Trust’ and sharing their story. You can still submit a selfie to show your support and raise awareness here:

FENAER joins initiative to call for national COPD plan in Spain

Federación Nacional de Asociaciones de Enfermedades Respiratorias (FENAER) has joined an initiative of the Fundación Ciencias de la Salud (Foundation for health sciences) in which doctors, pharmacists, physiotherapists, communicators and patients demand the creation of a National COPD Plan in Spain.

Find out more.

GAAPP involved in patient-centred publications on severe asthma and holds vaccination webinars for COPD patients

President of Global Allergy & Airways Patient Platform (GAAPP) Tonya Winders authored a new publication. The Article “Perspectives on decisions for treatment and care in severe asthma” was published in the World Allergy Organization Journal recently. Read and download the article.

GAAPP rolled out the multichannel campaign “Define Your Asthma” last year. Part of this campaign was a global survey of more than 200 people from 63 countries living with severe asthma. Download the visualised findings about the physical and emotional impact patients reported.

The forum “Vaccines that protect the respiratory community” took place online on 21 and 26 January. It was organised by the Spanish national association of COPD patients, APEPOC, in cooperation with GAAPP. The events were held in Spanish, and they will publish an English summary soon.

The COPD Patient Charter has been translated into seven languages. It outlines six principles of quality care that patients should expect to receive, wherever they live. The concepts were developed by a working group of 20 clinicians and patient advocacy group representatives and refined by the committee of experts.

Helping Hands Foundation celebrates inauguration of spirometry testing facility for children

The Helping Hands Foundation celebrated the inauguration of the pulmonary function testing facility for children in the Department of Paediatric Medicine of the Nishtar Medical University Hospital in Multan, Pakistan.

Allergy & Asthma Organization of Kenya prepares new patient empowerment programme

The Allergy & Asthma Organization of Kenya is preparing a program called Kenya Asthma Patient Resilience & Empowerment Program (KAPREP) where they intend to conduct Community Awareness Creation, Education, Advocacy, Allergy and Asthma Testing and Research.