Patient Organisation Round-up: October 2023

9 organisations in the ELF Patient Organisation Network shared updates with us this month.

New campaign from AfPF: You can’t see what’s killing me.  But you can hear it.

For pulmonary fibrosis awareness month this September, Action for Pulmonary Fibrosis (AfPF) listened to calls to be bolder and braver and break the silence about this devastating disease. This inspired them to create their hardest-hitting campaign yet: ‘You can’t see what’s killing me. But you can hear it’. The campaign shows a set of lungs transformed into loudspeakers, pumping out the breathing sounds of Geoff who lives with IPF and is an advocate for everyone affected by lung scarring. The campaign comes on the back of statistics that reveal around 1 in 3 people in the UK have never heard of pulmonary fibrosis.

Terry’s Journey: From Cancer to Poetry

In 2017, Terry received a Stage 4 ALK-positive lung cancer diagnosis. Wanting to share his experience without dwelling on negativity, he turned to poetry. Terry’s poem “CHEMO WARRIOR” pays tribute to those enduring cancer treatment. It’s a testament to resilience and the determination to keep going. This poem has now earned Terry recognition in the Sanofi People’s Poem project. It’s been selected as one of the best entries and Terry has been invited to an event at Battersea Arts Centre to showcase his work. Terry’s story shows how creativity can help navigate life’s challenges. He hopes to publish a book of his poems as a record of his journey and for his grandchildren to read. “Writing poetry helps me make sense of how I’m feeling,” says Terry. ALK+ UK wishes Terry continued strength. His journey reminds us of the power of art to heal and inspire.

FairLife L.C.C. advocates clean air for healthy lungs

FairLife L.C.C. welcomes the Paralympian and world swimming champion, Antonis Tsapatakis, as their new ambassador. FairLifeL.C.C. advocates lung health, within a healthy lifestyle and a green planet. They produced a short video to celebrate World Lung Day and World Environmental Health Day 2023, featuring Antonis Tsapatakis, paralympian and world swimming champion, Kiki Tsakaldimi, mountaineer and FairLife L.C.C.’s ambassador, and Eric Bell, high school student, as the voice of the young generation.

Navigating PH Now Available in Spanish from PHA

To mark Hispanic Heritage Month in the United States, the Pulmonary Hypertension Association announced the publication of “Navegando las Aguas de la Hipertension Pulmonar: Guía para pacientes recién diagnosticados.” The 60-page book includes the same valuable information as the English version, “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients.” The book aims to help readers understand PH, disease management, treatment options, diagnostic tests and more. Since PHA published Navigating PH in 2021, thousands of people have downloaded the book. Navigating PH is available in print and digital formats. Those new to PH can order free copies online in English or Spanish by contacting PHA. PHA also distributes postcards to health care providers so they can direct patients and caregivers to the book.

The Italian Bronchiectasis Association had a month full of important events

September was a very busy and exciting month for the Italian Bronchiectasis Association (AIB). They attended Sharing Breath in Forli to talk about the importance of breathing, EXPOAID in Rimini to talk about inclusion and disability, the event organised by AMAR in Perugia to fight air pollution. They were very grateful to have participated in the ERS International Congress and to have been part of the Patient Organisation Networking Day organised by ELF where they had the opportunity to share their psychological support project for patients and to connect with other organisations. They learned more about the importance of clean air, taking cues for possible future projects and enthusiastically took part in the #TakeTheActiveOption at Congress.

Respiriamo Insieme News

Respiriamo Insieme took part in a wide array of activities over the past month:

  • RI launched extra-clinical multidisciplinary support for people with Idiopathic Pulmonary Fibrosis.
  • To mark World Physiotherapy Day on 8 September RI participated in a round table discussion organised by the Brindisi-Lecce Interprovincial Order of the Physiotherapy Profession, which stimulated a fruitful discussion aimed at raising awareness of the growing importance of physiotherapy.
  • Upon invitation by AIFA, the Italian Medicines Agency, RI participated at the AIFA headquarters in Rome in the “AIFA Incontra” press conference. This new shared and ongoing pathway will allow Respiriamo Insieme and all patient associations who wish to collaborate to bring the demands of the patients they represent with a view to the shared construction of care responses.
  • A representative of the Respiriamo Insieme Association, Elisa, will now serve as a new patient expert in the European Medicines Agency (EMA) to help promote scientific excellence in the evaluation and oversight of medicines for the benefit of public and animal health in the European Union (EU), and to help ensure safety and innovative access to therapies for all respiratory patients in Europe and Italy.
  • On 25 September, for World Lung Day, RI provided free allergy and respiratory screenings to more than 200 guests at Ruffini Park in Turin (TO). Simultaneously great prevention, information and therapeutic education activities for all children and their parents at the Respiriamo Insieme booth at Marty Day at the ARCI club in Lazzeretto.

Pulmonary Fibrosis Trust announce their first Patron – Chef Alain Roux

The Pulmonary Fibrosis Trust are delighted to announce the new Patron of the Charity — Chef Alain Roux. Alain, a world famous and celebrated chef, takes on the patronage in memory of his father, Michel Roux OBE, founder of world famous The Waterside Inn, who died in March 2020 from idiopathic pulmonary fibrosis. The Roux family are well known as perhaps the most influential, dynamic, and charismatic family in the catering industry. Across five decades of hard work, culinary expertise combined with a passion for championing young chefs and waiters, the influence of the Roux family can be felt across the globe. Chef Alain met recently with the Trust Chair, Peter Bryce, and said: “Having witnessed my father suffer the disease, I care passionately about supporting the Trust’s efforts to try to help sufferers, their families and to improve treatments. It seems to be an illness that many people suffer but so many do not understand or know about it.”


Management Change and World Lung Day

September was an active month for PAHSSc. Long term president Kamil Hamidullah turned over the presidency to Meltem Ak. To celebrate PF and IPF awareness month, PAHSSc carried out online campaigns on social media. The 8th quarterly issue of Nefes came out full of patient stories and interviews with doctors. The final event of the month took place on 27 September, on World Lung Day. PAHSSc was one of the 6 organisers of this day, sponsored by the Turkish Respiratory Coalition.

Sevilla Respira attends GAAPP’s 2023 Global Respiratory Summit

On 8 September, the 2023 Global Respiratory Summit organised by the Global Allergy and Airway Patient Platform (GAAPP) took place in Milan, Italy. The event was held in a hybrid format, both virtual and face-to-face, at the NH Milano Congress Centre. During the summit, Sevilla Respira proposed a national strategic plan for asthma in Spain. In addition, the relationship between mental health and asthma was addressed, highlighting that mental health plays a fundamental role in the asthmatic crises suffered by asthma patients. The need to fight for free psychological help was raised and to ensure that all patients have access to it.  The event was attended by several associations, including Asmabi Euskadi, Alerma and FENAER, who supported the words of the spokesperson from Sevilla Respira.