Patient Organisation Round-up: January 2025

The Pulmonary Fibrosis Trust has had a busy few months. The organisation has attended parliamentary events at Westminster as part of its efforts to improve support for pulmonary fibrosis.  

Alain Roux, patron of the Pulmonary Fibrosis Trust and renowned Michelin Star chef, wrote to the Health Secretary and several MPs to raise the profile of lung health alongside other members. 

The organisation has also released a TV advert to raise awareness of pulmonary fibrosis symptoms and highlight the importance of early detection. The advert is currently being shown in the UK on GB News and Sky channels. 

The Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA) recently co-organised a conference in Lviv, with support from GAAPP, LEV-Course and St Nicholas Children’s Hospital and the Ministry of Health in Ukraine.

The event was titled ‘Diagnosis and treatment of pulmonary hypertension in Ukraine and abroad: Experience of doctors and patients.’ It provided an opportunity for experts from around the world to come together and discuss new approaches for managing pulmonary hypertension (PH) despite the challenges of the war.

The conference was also approved by ERN-LUNG, marking an important milestone for Ukrainian healthcare professionals to work alongside European institutions. PHURDA is hopeful that this opportunity will help drive the development of Ukrainian medicine in these difficult times.

FairLife Lung Cancer Care marked a milestone year in 2024. The organisation received six prestigious awards that brought its total to 14 in just four years.  

FairLife Lung Cancer Care was awarded ‘Organization of the Year’ at the Patient Partnerships Awards. This achievement recognises their commitment to supporting patients and advocacy. They also secured two Gold Awards for their impactful BREATH program alongside the Bravo Sustainability Award and two additional awards for their ‘Healthy Lungs’ initiative. 

The annual FairLife Conference brought together nearly 4,000 patients and professionals in person and online in 2024. The event provided a platform to discuss the latest lung cancer research, treatments, patient-centred care and public health policies. There was also a focus on the importance of working together to drive progress and improving access to therapies. 

FairLife hosted other successful events throughout the year, including its third annual ‘Healthy Lungs’ conference in Alexandroupoli. These events focussed on early diagnosis and preventive strategies and aimed to raise awareness and drive change within lung health. 

World Aspergillosis Day will take place on 3 February this year. The National Aspergillosis Centre is working alongside the Aspergillosis Trust to raise awareness of the disease.  

Activities will feature talks from professionals on the basics and research around the condition. Topics covered in the afternoon will be suggested by patients and may feature talks from people sharing their experiences. 

Learn more about the event and register. 

Alpha-1 Europe Alliance has recently published an abstract in the Orphanet Journal of Rare Diseases. This follows from their recent visit to the 2024 European Conference on Rare Diseases, where they presented a poster to discuss their work.  

Alpha-1 Europe Alliance consists of 3 working groups made up of 13 representatives from Austria, Belgium, Germany, Ireland, Italy, Norway, Spain, Switzerland and the United Kingdom. The group works together to advocate for the alpha-1 patient community in Europe and improve diagnosis, care and research. 

Patient communities looking to form an alliance are encouraged to review Alpha-1 Europe Alliance’s poster and abstract for information.

MNT Mon Poumon Mon Air has been recognised for taking part in the March for Rare Diseases event organised by the Alliance Maladies Rares last November. This annual event consists of a 7-kilometer walk in Paris to raise awareness of rare diseases.

10 members from the organisation attended the event and their efforts have helped to increase the visibility of non-tuberculosis mycobacterial (NTM) lung diseases. 

Katie Martin, trustee of the Aspergillosis Trust, hosted a stall at Fleetwood’s Affinity Shopping Centre alongside her family in December. 

Katie created a range of festive Aspergillosis Trust tote bags and magnetic bookmarks for the occasion to raise awareness of aspergillosis. The event was a great opportunity to educate the public about the condition.

Respiriamo Insieme presented the RIUNIAMOCI (Let’s Get Together) project at an event in Rome in December. The event was an opportunity to highlight the activities of the project in 2024, which is run in collaboration with the Italian Federation of Rare Diseases (UNIAMO).  

In addition to the project, topics discussed during the event included: 

• Rare lung diseases, with a focus on idiopathic pulmonary fibrosis (IPF) 

• Oxygen therapy 

• Digital health and home monitoring tools 

• Psychological support for patients and their families 

Deborah Diso, a representative from Respiriamo Insieme, presented the Charter of Needs for people living with IPF. This resource has been developed alongside patients and their families to raise awareness of the disease. The experiences of patients and their families were also showcased in an artistic expression workshop presented by Claudia Spina and provided patients with the opportunity to make their voices heard.

Read more. 

ALK Positive UK has launched a new resource to assist people with ALK-positive lung cancer in renewing their driving license after being diagnosed with a secondary brain tumour. 

In the UK, the Driver and Vehicle Licensing Agency (DVLA) is responsible for maintaining driving records and ensuring drivers meet the medical standards required to drive. The DVLA requires that any individual diagnosed with a brain tumour must have their driving license revoked until they can meet these standards again. 

To help patients navigate this process, the DVLA Advisory Panel at ALK Positive UK has created clear, step-by-step guidance. This resource explains the key rules, the forms a patient must complete and provides contact details for further support. Patients have already praised the resource for streamlining the process and enabling a faster renewal of their driving licenses. 

Read the full guide on the ALK Positive UK website.