Patient Organisation Round-up: March 2024

The patient’s voice is becoming increasingly important in the decision-making processes of government departments, hospitals, health insurance funds, healthcare providers and companies. When developing and improving services or products, the patient’s opinion is increasingly sought.  But this is only possible if this patient is also aware of the processes that are taking place and the objectives being pursued. This is why the Patient Expert Centre organises training and ensures cooperation between those different players, so that the patient’s voice is heard. The training consists of a general part and a disease-specific part with weekly online classes. Last year, eight patients with pulmonary hypertension from the Belgian patient association PH België attended the training and obtained their certificate. They can now officially call themselves ‘patient experts’. They will be used to guide their fellow patients through the healthcare landscape and represent their interests.

The Children’s Center for Pulmonary Hypertension in Lviv, Ukraine opened on 28 February 2024 thanks to the hard work of the Sister Dalilah Charitable Foundation, the Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA), the Paediatric Cardiology Department and hospital management teams at the St. Nicholas Hospital of the First Medical Union of Lviv and the Pulmonary Hypertension Association (PHA).

The new centre in Ukraine aims to improve the diagnosis and treatment of children with pulmonary hypertension, a rare disease that affects about 15-50 people in every million. Although it cannot be cured, in the past decade great improvements have been made in the understanding of the condition. Read the full story.

Many ALK+ lung cancer patients are advised to take breaks in Tyrosine Kinase Inhibitors (TKI) treatment, often to allow side effects to settle. ALK Positive Lung Cancer UK recently became aware of the NHS drug funding rules in relation to treatment breaks and felt it would be beneficial for patients to be informed about them.  The ALK+UK Medical and Scientific Panel produced a short leaflet explaining the current drug funding rules. Concerning these rules, the Panel is worried about patients who take a treatment break of over 6 weeks and then experience progression during that time. Under the current NHS rules, funding can be denied for restarting the same TKI in such situations, regardless of whether the progression is due to resistance to that TKI or from being off treatment. The Panel proposed an exception to this rule to allow funding for the same TKI if the patient’s oncologist believes retrying the same TKI might halt the progression. This proposal has gained support from the charity’s Clinical Advisors and will be submitted to NHS England. The Panel’s primary concern is ensuring that patients can achieve the maximum duration of effectiveness from each TKI prescribed to them.

On the European Alpha-1 Day (25 April), the Alpha-1 Spain Association will organise the fourth National Meeting of patients, a training and updating activity for people who suffer from the deficiency. The meeting will take place between Friday 19 April and Sunday 21 April in the city of Zamora. On 25 April itself, there will be information tables about Alfa-1 in hospitals throughout Spain of and the importance of increasing plasma donations will be promoted.

The International Breathe Easy group meetings are informal and friendly, offering lots of information sessions from inspirational speakers, as well as light physical activity sessions to get you moving again. They meet online, on the last Wednesday of every month at 19:00 GMT. The meetings last for an hour and are very interactive with time for discussions on the topics with the other group members, who are from all over the world including the UK, Canada, and the USA.

The 3rd National Congress on the Diagnosis and Treatment of Sarcoidosis is dedicated to ‘Comorbidities and the holistic approach to the disease’. They represent an often-underestimated aspect of the disease and often compromise the patient’s quality of life, complicating its management.

To mark Rare Disease Day (29 February), MNT Mon Poumon Mon Air worked with RespiFIL (Rare Respiratory Diseases Health Line) to present its care pathway hopscotch which retraces the journey of a patient suffering from a rare respiratory disease. The Alliance for Pulmonary Hypertension is holding its first webinar of 2024 on the topic of lung and heart-lung transplant in pulmonary hypertension. Featuring a prestigious panel of speakers, the webinar will address many topics, including the indications for lung transplant in pulmonary hypertension, the surgical techniques, post-transplant challenges, and the patient experience.  The slides, video recordings and transcripts will be shared on the ph-ksp.com platform shortly after the event in the “Our webinars” section.  We are proud that this webinar has been endorsed by the European Lung Foundation, as well as ESOT, European Society for Organ Transplantation, and by ERN-LUNG – the European Reference Network for rare respiratory diseases.It was a great opportunity to explain the rare lung disease Non-Tuberculous Mycobacteria (NTM). To support MNT Mon Poumon Mon Air, and to support NTM patients, please visit: https://www.mntmonpoumonmonair.org.

On 12 November 2024, Pneumolight is inviting all authorities, organisations and the general public to help increase visibility of pneumonia worldwide. Under the slogan “Pneumonia Affects Everyone”, the global pneumonia awareness campaign, Pneumolight 2024, will illuminate monuments worldwide to mark World Pneumonia Day on 12 November. Pneumonia is the single biggest infectious killer of adults and children – claiming the lives of 2.5 million, including 672,000 children, in 2019. The coordinator of the global campaign Dr Catia Cilloniz, pneumonia researcher at the CIBERES/Hospital Clinic of Barcelona, calls on all authorities and people who have the ability to  illuminate a monument or who wish to join and support this global campaign to get in contact by email cilloniz@recerca.clinic.cat. In the 2020 pneumonia campaign, 252 monuments across 52 countries worldwide were illuminated. This year, Pneumolight is more than ever committed to continue raising awareness about pneumonia and also giving visibility to World Pneumonia Day.

Respiriamo Insieme is strongly committed to the protection and promotion of the treatment rights of people with asthma and severe asthma. With its Scientific Committee, it has now launched a survey to gather more information on the proportion of patients using high doses of oral corticosteroids, the adequacy of inhaled steroid treatment (ICS) and the involvement of specialists in disease management. This data will help propose activities to reduce the impact from the use of these drugs on patients with uncontrolled asthma and severe asthma.

Respiriamo Insieme is also celebrating its president Dr Simona Barbaglia for her appointment as a member of the Lombardy Region 4 Ethics Committee. For over 9 years, Dr Barbaglia has given priority to the thousands of people who have turned to the Association every year, always treating people with sensitivity, humility, hospitality and professionalism. Her strong ethics, knowledge and seriousness have been rewarded and she will be able to make a difference in this new prestigious position as well.

Every year, April marks Sarcoidosis Awareness Month. This year SarcoidosisUK are asking buildings and landmarks across the country to light up in blue (SarcoidosisUK’s colour) to shine a light on sarcoidosis.  Over 20 buildings have agreed to ‘Go Blue’ to show their support for everyone affected by sarcoidosis and we are so excited to see them! Keep an eye out for a building lighting up near you!

The Alliance for Pulmonary Hypertension is holding its first webinar of 2024 on the topic of lung and heart-lung transplant in pulmonary hypertension. Featuring a prestigious panel of speakers, the webinar will address many topics, including the indications for lung transplant in pulmonary hypertension, the surgical techniques, post-transplant challenges, and the patient experience.  The slides, video recordings and transcripts will be shared on the ph-ksp.com platform shortly after the event in the “Our webinars” section.  We are proud that this webinar has been endorsed by the European Lung Foundation, as well as ESOT, European Society for Organ Transplantation, and by ERN-LUNG – the European Reference Network for rare respiratory diseases.

The Cystic Fibrosis Society are delighted to announce some exciting developments in the Twinning Expansion Project (TEP), a three-year collaboration between Cystic Fibrosis Europe (CFE) and ECFS, aiming at improving access to high quality, multidisciplinary cystic fibrosis (CF) care and optimal treatment across Europe.  The TEP aims to enhance CF care by fostering collaboration and knowledge exchange among healthcare centres and among patient organisations. Through this initiative, institutions partner up to share expertise, resources, and best practices, ultimately improving patient outcomes and advancing research in the field of CF. In a recent call for the ECFS-CFE Twinning Expansion Project, ECFS had a total of 40 applications from all over Europe. This remarkable interest underscores the commitment and enthusiasm within the community to drive positive change in care. ECFS were able to welcome new twins in the TEP network, further expanding the community of collaborative healthcare providers. These partnerships hold the promise of fruitful cooperation, facilitating exchanges of ideas and innovation. Together, we strive to elevate standards of care, promote research advancements, and ultimately improve the quality of life for individuals living with CF. For more information about the Twinning Expansion Project and its ongoing efforts to advance cystic fibrosis care, please visit the CFE or ECFS websites or get in touch.