Patient Organisation Round-up: February 2025

The Pulmonary Hypertension Society of Latvia looks forward to raising the profile of pulmonary hypertension (PH) in 2025.  

The organisation will take part in 2 projects including the “Support Programme for People with Disabilities and Seniors” and “Breathing as One!”. Together these projects aim to promote equal opportunities for people living with PH and study its impact on patients’ social lives and wellbeing. 

Patient representatives will also celebrate the resilience of the PH community at the Oxygen Festival and Photo Exhibition this year and foster support for patients in Latvia. They also look forward to attending the Rare Disease Forum 2025 where they will share insights on the importance of patient engagement in clinical trials and discuss the link between reproductive health and rare diseases. 

Learn more. 

Action for Pulmonary Fibrosis (APF) organised a parliamentary event in London on 5 February to highlight the current issues in diagnosis and treatment for pulmonary fibrosis (PF). 50 MEPs attended the event after more than 1000 people living with the condition wrote to their MPs calling for urgent improvements in care.  

The organisation hopes that the event will help drive change and address inequalities in PF care as Integrated Care Boards will soon be responsible for specialist Interstitial Lung Disease (ILD) services in the UK.  

EUFOREA has launched a new Patient Portal to support people living with lung conditions. The first module focuses on Chronic Rhinosinusitis (CRS), helping patients and their families better understand the disease.

Chronic Rhinosinusitis (CRS) is a condition where the lining of the sinuses becomes inflamed and swollen. This can negatively affect a patient’s quality of life, yet the condition often goes undiagnosed.

The portal includes the following resources:

• Educational materials to explain CRS
• Videos from experts discussing diagnosis and treatment
• Practical tips to help patients prepare for consultations and navigate their journey

EUFOREA hopes that the Patient Portal can empower CRS patients to manage their condition and improve their quality of life.

Visit the Patient Portal. 

Respiriamo Insieme recently discussed the need to expand vaccinations against RSV and influenza to infants and the elderly at the Piedmont Region. This could reduce the risk of disease flare-ups and hospitalisations in Italy. 

The organisation would like to thank Councillor Riboldi and Chief of Cabinet Dr. Fabrizio Priano for their efforts to ensure better health in Piedmont. They would also like to highlight the scientific contributions brought to the meeting by Professor Paolo Solidoro, director of pneumonology at the Molinette Hospital in Turin.  

Cystic Fibrosis (CF) Europe and its member organisations are urging the Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMA) to improve access to Kaftrio. 

Kaftrio can treat some types of CF but people with some genetic variants have not been allowed to take part in clinical trials. CF Europe calls for new rules around the licensing and use of Kaftrio and other treatments for rare diseases.

Learn more. 

The Spanish Alpha-1 Patients’ Association (Alfa-1 España) has partnered with the Share4Rare platform of the Sant Joan de Déu Foundation to launch a survey for people with alpha-1 antitrypsin deficiency (AATD). This study aims to collect data on:

• Demographic information on AATD

• Patients’ wellbeing and satisfaction with medical care 

• Diagnosed pathologies and patients’ views of the disease 

Alfa-1 España encourages people living with alpha-1 antitrypsin deficiency to take part in this survey which is supported by AATD researchers. It takes approximately 20 minutes to complete and responses are confidential.  

Take the survey. 

ALK+ UK is preparing to host the 2025 ALK+ Lung Cancer Patient Conference at the Radisson Red Hotel in Heathrow from the 26 to 28 September. The organisation hopes to welcome up to 200 attendees this year and build on 3 years of growing attendance. 

There will be an opportunity to hear insights from leading experts in ALK-positive lung cancer research. In addition, there will be some sessions on mental health and radiotherapy. The confirmed speakers so far include: 

•  Prof. Sanjay Popat 

• Prof. Alastair Greystoke 

• Dr. Tom Newsom-Davis 

• Dr. Sharmistha Ghosh 

• Dr. Fabio Gomes.  

The event is a unique opportunity for people affected by ALK-positive lung cancer to connect with others who share similar experiences and learn from leading specialists. Attendance is free for ALK-positive patients and 1 guest, with travel and shared accommodation expenses covered by the charity.  

ALK Positive UK is offering subsidised places to Lung Cancer Nurse Specialists, with a total cost of £150 per person for 2 nights’ accommodation and dinner on both evenings. 

Learn more. 

Bambini con la Ccam are keen to help more families with a child affected by a lung malformation in 2025. The organisation offers emotional and financial support and gives telephone advice 24 hours a day, 7 days a week to families across Europe.

Contact Bambini con la Ccam.

The contact number for families outside of Italy is: +393291864884.

There has been a lower supply of medicines for pulmonary hypertension (PH) in Ukraine since the war began and many Ukrainians do not receive their treatments on time.

For many years the Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA) has run a local programme to support PH patients in Lviv to receive basic therapy. The organisation wants to thank everyone who has recognised the importance of this initiative and encourages local authorities to financially support these efforts in 2025. 

Follow PHURDA on Facebook for more information.

On 3 February the Aspergillosis Trust took part in initiatives to raise awareness of aspergillosis on World Aspergillosis Day. Lisa McNeil, chairwoman of the Aspergillosis Trust, discussed how the charity helps educate patients and allows them to advocate for their condition in the annual day of talks at the National Aspergillosis Centre.  

The organisation also launched a social media campaign to educate the public on the diagnosis journey and the importance of taking global action. This was supported by the Global Allergy and Airways Patient Platform and people were encouraged to support the cause by wearing purple. 

Katie Martin, a trustee of the charity also shared aspergillosis awareness materials with local doctor’s surgeries.  

The French Federation of Associations of Patients with Respiratory Insufficiency or Handicap (FFAAIR) took part in the 29th edition of the CPLF French Language Pneumology Congress.   

Patient representatives shared their insights in the session titled “To live with disease” and this was well-received by the audience. Members of FFAAIR also spoke about their experiences of asthma at school and work, living with pulmonary fibrosis and the barriers to quitting smoking for people with COPD.

FFAAIR looks forward to working towards better lung health in 2025.  

MNT Mon Poumon Mon Air recently attended the CPLF French Language Pneumology Congress alongside RespiFIL. The event was held from 24 to 26 January in Marseille and focused on the links between climate change and lung health.

MNT Mon Poumon Mon Air were excited to meet with their sponsors and members of their scientific committee including Professor Claire Andréjak who is also the President of the Société de Pneumologie de Langue Française (SPLF). They look forward to raising the profile of lung health and networking with other organisations at next year’s event.

The Spanish Patient Organisation of COPD (APEPOC) has welcomed Dr José Luis Carretero to their team of advisors in their mission to improve the quality of life for COPD patients. Dr Carretero specialises in public health and occupational therapy at the Central University Hospital of Asturias.  

Many people living with COPD have a reduced quality of life but social inclusion allows people with the condition to get involved in the same opportunities as their peers. APEPOC look forward to working alongside Dr Carratero and improving the outcomes for those with COPD.  

Learn more.  

The number of lung cancer cases is rising in Colombia, highlighting a need to increase awareness.

Last week, INSPIRAT (the Colombian Foundation for Lung Cancer, Asthma, COPD and other respiratory and oncological diseases) worked alongside experts from the National Cancer Institute and other organisations to host a webinar for World Cancer Day.

The event was open to anyone with an interest in lung cancer and highlighted the recent developments in diagnosis and treatment for the condition.

Watch the recording. 

The Respiralia Foundation will host the 26th edition of the Swimming Tour around Formentera from 27-29 June this year. The event aims to raise the profile of cystic fibrosis and improve the quality of life for people living with the condition.

Follow Respiralia on Instagram for updates. 

The Belgian Lung Foundation (BeLF) brought together patients, experts and members of parliament to raise awareness of COPD and discuss policy for World COPD Day in November.

Many people living with COPD in Belgium often face long waits for a diagnosis and this event marked an important step towards improved care. Attendees were given the opportunity to take a lung function (spirometry) test and discuss ways to improve COPD policy.

BeLF hopes to raise awareness of the challenges of living with COPD as Belgium currently ranks 31st out of 34 countries in its ability to manage the condition. The organisation calls for more action to improve quality of life for those affected.