Patient Organisation Round-up: January 2024

The Irish Lung Fibrosis Association (ILFA) was thrilled to win the Irish Healthcare Award 2023 for Patient Organisation Group of the Year for their project entitled “Dancing for health and wellbeing: A feasibility study to examine the health impacts of dancing for lung fibrosis patients.”  Dr Vikram Niranjan, project lead, accepted the award on behalf of the team and was joined by Matt Cullen (lung fibrosis patient, dance class participant and co-author on the research papers), Gemma O’Dowd and Nicola Cassidy from ILFA.

The project aimed to evaluate the feasibility and physical and mental health benefits of a structured online dancing programme for patients living with lung fibrosis. ILFA is grateful to all the team involved with this project – Dr Vikram Niranjan (project lead); Tracey Barnes (choreographer); research team members  Giampiero Tarantino, Jaspal Kumar, Dr Raymond O’Connor, and Dr Andrew O’Regan; ILFA’s patient collaborators Finola O’Neill and Matt Cullen, and the ILFA team – Liam Galvin, Gemma O’Dowd and Nicola Cassidy – who helped develop the project. This hugely valuable, successful and fun initiative was funded with a grant from the Irish Research Council. Sincere thanks to all the patients who participated and provided valuable feedback for the study. The 2023 Irish Healthcare Award is a fantastic honour and a much appreciated and fitting tribute to celebrate this important patient-centred research collaboration!

Fenaer, the Spanish Federation of Associations of Allergic and Respiratory Patients, is organising a biannual meeting focused on topics of vital importance for patients such as innovation, access and equity in health care. It will be held at the beginning of March 2024 at the La Princesa University Hospital in Madrid. The objective is to foster a space for collaboration and exchange of information between patients, their associations and other key players in the sector.

A new year, a new beginning. An ideal opportunity to look back at last year, but above all to look forward with hope at what is to come. “Hope” is also the theme of this edition of the Belgian Patient Association for Pulmonary Hypertension’s annual magazine Ademloos. In the past year, they have seen remarkable developments. New guidelines for the treatment of pulmonary hypertension offer doctors and patients valuable insights to optimise care. Another exciting aspect they highlight is the introduction of new medications that broaden the horizon of treatment options. These innovations promise not only improved outcomes, but also an increased quality of life.  In this magazine, they share stories of hope and resilience. Finally, in their 2023 Annual Review, they take a look back at the milestones they have achieved. It is a moment of reflection, in which they reflect on their joint efforts, successes and future goals. Together we are stronger, and it is encouraging and hopeful to see what we have achieved together.

The 2024 update of the ARIA, GINA and GOLD recommendations for the treatment of Allergic Rhinitis, Asthma and Chronic Obstructive Pulmonary Disease and their comorbidities was held in Florence. It was an important meeting of the most distinguished national and international clinicians, with whom Respiriamo Insieme, together with other patient and scientific associations, met and exchanged views to review, renew and make recommendations for these diseases.

Respiriamo Insieme was also happy to have participated and contributed to the 8^th edition of the Patient Advocacy Network in Milan, which focused on patient involvement with a special emphasis on co-design of services and planning and monitoring of activities. They hope that Agenas, the National Agency for Regional Health Services, which for now has set up a working group to implement a policy act where patient associations are still not involved, will appreciate the contributions that will come from this meeting to recognise that associations have a role in advocacy.

EUFOREA is delighted to announce the 3^rd annual Global Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) Awareness Day. The 2024 theme is ‘The Empowered Patient’ and this campaign aims to empower all patients to play an active role in their care through improving the availability of reliable information about CRSwNP disease and its link to comorbidities including asthma; providing a practical guide to help patients prepare for visits with their healthcare provider for optimal patient outcomes, and giving opportunities to advocate for disease awareness and recognition among policymakers. For more information about this campaign and to pledge your organisation’s support, please contact elizabeth.vanstaeyen@euforea.eu.

Karolien Verheyen, part of the Belgian patient organisation Patients Advice & Meeting, has written and performed a song about the experience of living with sarcoidosis. It is now available to listen to on YouTube.

From January 2024, participation in the new registry for children and adolescents with alpha-1 antitrypsin deficiency (Alpha-1-KIDS) will be possible. Registration is done by the families themselves. To make participation as uncomplicated as possible, the University Hospital in Bonn has developed the first app-based registry in Germany. Alternatively, you can also participate via the registry website. Thanks to Professor Rainer Ganschow’s team. For more information visit the Alpha-1 Bonn website.

The MNT Mon Poumon Mon Air association is organising a video call for patients and professionals on 18 January at 18:00 CET.  “Relationships with those around you when the disease gets involved…” by Mr Stéphane Vagnarelli, a member of the association’s scientific committee. Having this disease can upset the balance that has been skilfully built up over the years with our loved ones. It also upsets one’s self-image and creates uncertainty, fear, and sometimes even anger. In this context, people’s relationships with those around them are bound to be destabilised before finding a new equilibrium. In this call, the association hopes to help people work though these difficulties through sharing experiences and the solutions found.

Alfa-1 España, the Alpha-1 association of Spain, celebrates its 25th anniversary in 2024. It will mark the occasion by scheduling patient meetings and with a video campaign of people involved in its operation. The first of them is led by the President, Mariano Pastor, with a review of the history of the association that defends the rights of people with Alpha-1 Antitrypsin Deficiency, a rare genetic condition that leads to serious respiratory diseases.