Patient Organisation Round-Up: August 2025

The Spanish COPD association, APEPOC, has launched a radio campaign to raise awareness of COPD and highlight the high rates of underdiagnosis in Spain. COPD is a major public health concern but it is often not diagnosed until later stages, leading to increased risks and costs.

The campaign hopes to highlight that delays in diagnosis can lead to more flare-ups, higher mortality rates and reduced quality of life. Early action is important and can help prevent disability later in life.

The award-winning See Through the Symptoms campaign has relaunched with a new website and updated resources to support earlier lung cancer diagnosis. Photographed by Rankin and named Public Health Initiative of the Year in 2022, the campaign raises awareness of symptoms that may be missed in people who do not fit the typical lung cancer profile, especially those who have never smoked.

It encourages GPs and primary care teams to consider a chest X-ray under the Faster Diagnosis Standard if symptoms like persistent cough, breathlessness, back or shoulder pain or facial swelling are unexplained or ongoing.

Created by ALK Positive UK, EGFR Positive UK, and the Ruth Strauss Foundation as part of the All You Need Is Lungs initiative, the campaign is trusted by healthcare professionals across the UK. The latest phase launched on World Lung Cancer Day, with new materials continuing to be added ahead of Lung Cancer Awareness Month.

Respiralia’s annual swim around Formentera, which raises awareness of Cystic Fibrosis, was the most successful in the organisation’s history. 220 people took part. Good weather and keen participants made for a perfect day, keeping the tradition alive and highlighting the condition.

The Asthma Society of Ireland launched their Pre-Budget Submission, asking the government to take action in Budget 2026 to help people with asthma who struggle to afford their treatment. Survey data revealed that 1 in 4 people with asthma went without medication in the previous three months due to cost pressures. Over half of respondents are struggling to cover their everyday expenses, with 1 in 4 falling behind on essential household bills. The report, Backing Every Breath, Building Better Care, calls for urgent investment in three priority areas: making medication more affordable, expanding asthma care services and staffing, and improving indoor air quality in homes through targeted energy upgrades.

Fundación INSPIRAT hosted a webinar aimed at patients and the public, providing information to help people better understand COPD and support self-care. The webinar’s title, Thinking about Chronic Obstructive Pulmonary Disease (COPD), highlights the importance of recognising that COPD is progressive and can harm health if untreated.

According to the World Health Organization (WHO), COPD is the third leading cause of death worldwide, after heart disease and stroke. In Colombia, 38 people die from COPD every day, making it the fourth leading cause of death. Symptoms usually appear in people over 40 years old and many are unaware they have the condition. This can delay treatment and affect quality of life.

PHURDA has started a new project to provide psychological support for Ukrainians with Pulmonary Hypertension (PH) and other lung diseases in the conditions of war. The first online group support meeting took place at the end of July, giving participants a safe space to discuss their health and worries. In a small but sincere online circle, they talked about anxiety and how it shows up, why it arises and how to support yourself during difficult life circumstances.

The project also includes individual and group psychological sessions and a Viber support chat. A survey before the project confirmed the need for tailored support and skills to cope with stress. It found that 4 out of 5 participants often or sometimes experience anxiety, emotional exhaustion or depression.

The Post Infection Developed Bronchiolitis Obliterans (PIBO) Foundation held its first patient day. Parents could share concerns and get advice from doctors and experts. Paediatric pulmonologists, Dr Terheggen (Amsterdam UMC) and Dr Pourier (Radboud UMC, Nijmegen) presented the latest on diagnosis and treatment for PIBO patients and answered questions from the audience. The event was a success and provided an important forum for peer learning and support.

The Lung Health Foundation has launched a new Community of Practice platform and is will host its first event. The platform offers opportunities for peer connection, learning and collaboration.  The first educational session, Managing Chronic Cough in Primary Care, will take place on 20 August at 12:00 PM EST online and will feature Alan Kaplan, the Chairperson of the Family Physician Airways Group of Canada. Registration is now open.

EUFOREA has launched a dedicated asthma module on its Patient Portal. The module provides resources for people living with asthma and their caregivers. Developed by experts and patient representatives, it includes interactive features, symptom trackers and guidance on treatment and self-management. With this launch, EUFOREA reaffirms its commitment to patient-centred, digital health solutions that increase understanding, engagement and better outcomes for those affected by airway diseases.