Patient Organisation Round-up: July 2025

Representatives from PHURDA took part in the recent IRC Workshop in Amsterdam as a member of the Ukrainian Respiratory Coalition (URC). The workshop brought together coalition members from 13 countries working to improve respiratory health.

PHURDA shared how URC brings together patients, doctors, scientists and civil society to advocate for better care in Ukraine, with the patient voice central to decision-making. They emphasised the importance of cross-sector collaboration to ensure access to early diagnosis, treatment, rehabilitation and psychological support, especially during wartime when health system challenges are heightened.

ILFA recently launched its 2025-2030 Equitable Lung Fibrosis Care in Ireland strategy highlighting challenges such as delayed diagnosis, limited access to therapies and treatments and a lack of affordable care. These challenges are particularly relevant to patients living outside of the 4 major specialist centre areas in Dublin, Cork, Limerick and Galway.

The strategy calls for a National Lung Fibrosis Clinical Programme, expanded specialist services, a patient registry, affordable oxygen therapy and greater investment in pulmonary rehabilitation and psychological supports. ILFA emphasises that equitable care is a human right and has urged the Irish Government to adopt its recommendations as a matter of urgency.

The Alliance for Pulmonary Hypertension kicked off its 2025 “PEP Talks” series on May 5. These short, engaging videos—Patients Empowering Patients—offer valuable insights from those who live with pulmonary hypertension. Each 5-session series combines personal stories, coping strategies and digital and advocacy skills training for patients and families.

The first 5 talks have already reached 1,700 views, demonstrating strong community interest and engagement.

Respiriamo Insieme is starting a special health programme for children with asthma on July 13 in Doganaccia, Tuscany. This is the first time in Europe that children with asthma can come to the High Altitude Health Campus to get treatment, learn how to manage their asthma and enjoy a healthy environment.

The programme was created with help from the National Research Council, the Italian Alpine Club, Meyer Pediatric Hospital and others. The first group will stay from July 13 to 27, giving children a fun and unique way to take care of their asthma.

The PinkTree Foundation has introduced an innovative 6-second voice test using AI to screen for early lung problems in Mumbai’s slums. This simple smartphone test listens to people’s voices to detect signs of lung issues without needing hospital visits or expensive machines.

Over 100 people were tested at home, with 18% flagged for urgent follow-up. Most felt safer being checked this way. PinkTree combines digital tools with community outreach to make lung health care easier to access, especially for those in underserved areas. They aim to expand this model across India to ensure everyone can get early lung care.

MNT Mon Poumon Mon Air participated in the 2025 Alliance Maladies Rares Congress themed “Rare Diseases by 2050.”

The event featured laboratory visits, conferences, roundtables and discussions on future projections. It celebrated 25 years of collective efforts to raise awareness and recognition of rare diseases affecting 3 million people in France. The Congress brought together patient associations, caregivers, researchers, public authorities and companies. A new President, Jean-Philippe Plançon, was elected, succeeding Héléne Berrué Gaillard.

MNT Mon Poumon Mon Air remains committed to strengthening the rare disease community through collaboration and advocacy.

EUFOREA is preparing to launch a new asthma module on its Patient Portal, an easy-to-use online space providing trusted information and tools for people living with airway diseases.

The portal will help patients and caregivers better understand and manage asthma. The site already features helpful content on chronic rhinosinusitis (CRS) and the upcoming asthma section promises even more support. EUFOREA’s goal is to empower patients with accessible knowledge for better breathing and healthier lives.