Patient Organisation Round-up: December 2025

MNT Mon Poumon Mon Air recently attended the Alliance Maladies Rares regional meeting in Paris. Alliance Maladies Rares is the French collective organisation supporting patient groups. These regional meetings are organised to help local organisations connect and share their activities and give patients the opportunity to build valuable contacts. They also offer a chance for patient organisations to present their work to the healthcare community in France and across Europe.

Justine Hamaide, founder of MNT Mon Poumon Mon Air, said: “these meetings are always very appreciated because they truly show sick people and their families that they are not alone. It is also the opportunity to ask questions and have discussions on rare diseases. The Alliance Maldies Rares meetings always bring information, solidarity in an atmosphere of conviviality and kindness.”

This year, SarcoidosisUK launched an exciting new initiative – the Research Innovation Award. The organisation has committed to funding three annual research awards to support innovative and novel proposals that address their research priorities, including:

• Expanding understanding of sarcoidosis
• Improving diagnosis and prognosis
• Discovering new and better treatments
• Addressing quality of life issues for those living with sarcoidosis
• Advancing sarcoidosis epidemiology in the UK

SarcoidosisUK is excited to see how this award can help improve understanding of the condition and lead to better outcomes for patients. They extend their thanks to all who have supported their research efforts.

Lisa McNeil, chair of the Aspergillosis Trust was honoured to take part in the first ELF Aspergillosis Patient Conference on Saturday 29 November, co-chairing the event with friend and fellow Aspergillosis PAG member Tom Bermingham.

She said: “bringing together patients, clinicians and researchers in one virtual space marked an important moment for the aspergillosis community. For many people living with the condition, opportunities like this provide a rare chance to be heard, to learn, and to connect with others who truly understand the challenges of daily life with aspergillosis.”

The session explored key topics such as diagnosis, treatment options, daily management and the wider impact on quality of life. She shared that what made the event especially valuable was an open and honest exchange:

• patients sharing lived experiences
• experts offering clear, accessible insights
• everyone working together to strengthen awareness and support.

Lisa left the session hopeful that this marks the start of even greater collaboration and progress for the aspergillosis community.

On 22 November, the Dutch Pulmonary Hypertension Foundation (Stichting Pulmonale Hypertensie) held an information day for people with PH and their loved ones. The event marked National Pulmonary Hypertension Day and focused on patient connections and clear, accessible information. 190 people attended, with a full programme featuring:

• Arieke van Liere, who opened with a powerful metaphor on interwoven threads, setting the tone for “Stronger Together”
• Dr Jurjan Aman (Amsterdam UMC), summarising developments in emerging therapies and research
• Prof. Manu Keirse (KU Leuven), speaking movingly about loss and resilience and the importance of psychosocial support
• Jessica van Hooff, highlighting the often underestimated burden carried by partners and caregivers
• Contributions from Dr Thijs Mulder and the Radboudumc team on PH basics and rehabilitation, supported by expert-by-experience Charlot van de Ven

Participants left the event with new insights, recognition and warm conversations, proving that “Stronger Together” was more than a theme; it was the experience of the day itself.

On 15 November 2025, the PinkTree Foundation attended NAPCON 2025, India’s largest national pulmonology conference. With support from the Indian Chest Society (ICS), PinkTree hosted their first ever lung health interactive panel discussion called “Empowering Patient Voices at NAPCON 2025.” The panel featured both doctors and patients.

Expert listened closely as patients shared powerful stories about:

• How breathlessness affects everyday life
• Emotional stress during flare-ups
• Coping with triggers they don’t fully understand
• How home spirometry gives confidence and control

One patient explained how PinkTree-supported monitoring helped them anticipate flare-ups. Eminent pulmonologists from across the country attended the session, many noting how patient stories added essential real-world context to clinical understanding.

PinkTree Founder Nandita Dandekar said: “Our mission is to make lung health empowering, data-driven and accessible, and to build an ecosystem of care for patients. Here’s to a future where lung health is shaped by partnership and powered by patient voices.”

The Asociación de Pacientes con EPOC (APEPOC) held a webinar on 27 November to share highlights from the latest COPD research from the ERS Congress in Amsterdam. One of Spain’s leading pulmonologists and APEPOP’s pulmonology advisor, Dr. Felipe Villar, discussed the news with COPD patients, their families, and other stakeholders. The session focused on the current landscape of biologics in asthma and COPD, prevention strategies, and improving air quality for global respiratory health. Participants also heard insights on:

• Digital health and AI solutions in respiratory medicine
• Diagnosis and management of breathlessness
• New models of rehabilitation and chronic care
• The impact of exercise limitation in chronic respiratory diseases

The recording is now available on YouTube.

On 19 November, Respiriamo Insieme attended the Scritture in Rosa literary competition in Rome. This writing competition was created to give a voice to women living with COPD, and was open to patients, caregivers and healthcare professionals. Journalist Annalisa Manduca and writer Sara Rattaro were among judges on the panel.

Nine winners were awarded prizes and excerpts from the selected stories were read to attendees, who heard praise from the judges. These stories will form the first edition of an upcoming publication. The day highlighted how writing can unite, heal and give a voice to experiences that often remain silent. Even when breathing is difficult, life continues to demand space, love and presence.

The moment was made even more meaningful by the presence of Hon. Ilenia Malavasi and Sen. Elena Murelli, who presented the awards and reiterated the importance of keeping COPD in the public eye. Coming soon… the publication!

Hengitysliitto’s training day brought together 500 participants in Tampere and online to hear the latest research on effective treatment of respiratory diseases. The event focused on breathing exercises, the health benefits of nature, self-management of asthma and how local respiratory associations can support rehabilitation. Participants also learned about the lived experiences of people with respiratory illnesses, as well as the diverse projects of Hengitysliitto (The Organisation for Respiratory Health in Finland) and Filha ry.