Patient Organisation Round-up: February 2024

We are living in an era where the new norm is now focused on digital health, embedding care management in our daily lives. Telehealth appointments are routine for doctor-patient consultations.

However, does this mean that these services are working well and serving the interests of patient-caregiver and healthcare professionals for better relationships, care and treatment?

Thanks to EHTEL support, the Lovexair Foundation has set-up a simple survey in English, Spanish, Italian and Portuguese for patient-caregiver and healthcare professional communities and networks. Sofia Zanrosso a young researcher is leading this research project for her Master’s thesis.

Find out more about the survey on the Lovexair website!

Alfa-1 Spain will mark European Alpha-1 Awareness Day 2024 with the fourth National Patient Meeting in Zamora 19–21 April. The day will feature the collaboration of prominent experts in alpha-1 in Spain. There will also be workshops on nutrition and mindfulness aimed at people with alpha-1 (both adults and children) and group walks along trails of the Camino de Santiago in the surroundings of Zamora and in the city itself.

On Thursday 25 January 2024, Respiriamo Insieme was invited by Vincenzo Alaia, Chairman of the Campania Health Commission, to a hearing about the prevention of Respiratory Syncytial Virus (RSV) infections. Respiriamo Insieme would like to thank Chairman Alaia, Vice President of the Campania Regional Council Loredana Raia and all the members of the Fifth Standing Committee on Health and Social Security for the sensitivity and willingness shown toward this significant public health problem that heavily impacts the health of those most fragile (children, patients with chronic respiratory diseases and the elderly). It often requires emergency services, intensive care admissions and in the most serious situations can lead to death. Today, with the new therapeutic opportunities offered by scientific research this can be avoided. Respiriamo Insieme also thanks its regional liaison Ornella for her continued commitment to this area.

To mark World Cancer Day 2024, ALK+ Lung Cancer UK joined forces with EGFR+ UK and the Ruth Strauss Foundation at Radiotherapy UK’s #CatchUpWithCancer campaign in Westminster, showcasing their strong collaborative relationship. Alongside over 20 other charities, leading clinicians, and cancer specialists, they highlighted the urgent need for a comprehensive Cancer Plan to tackle the UK’s significant treatment delays. With statistics showing that every four-week delay in treatment raises the mortality risk by 10%, the event underscored the critical importance of timely care. Since 2020, over 220,000 cancer patients have faced unacceptable waits for treatment. Supported by more than 50 MPs, the campaign calls for decisive action to ensure prompt and effective treatment for all cancer patients. The joint participation of ALK+ Lung Cancer UK, EGFR+ UK, and the Ruth Strauss Foundation in this campaign emphasises their united advocacy for systemic changes to enhance cancer care, highlighting the importance of collective action in addressing the UK’s cancer treatment challenges.  Picture: 31 January 2024 (from left to right) – Deepa Doshi, the Ruth Strauss Foundation, Head of Mission Services, Debra Montague, ALK+ UK Chair, Angela Terry, EGFR+ UK Chair and Radiotherapy UK.

The Spanish COPD association, APEPOC, has just published its annual report for 2023. Last year their activities and projects revolved around mental health and collaborative sustainability, two concepts of utmost importance for our healthcare ecosystem. Their main commitment has been with research, as they have participated in different studies, and with the fight against tobacco. Check out their projects (“the micro plastics guide” and the “experimental study of a health coach”) and watch their webinars and activities again.

World Aspergillosis Day is an important day on the Aspergillosis Trust’s (AT’s) calendar and this year was no different. With the help of their friends at GAAPP, AT ran a 10-day campaign across all their social media platforms, promoting patient advocacy facts that are very important to them. They shared a reel raising awareness of the importance of earlier diagnosis, new treatments and access to experts that has been viewed over 1000 times. They asked people to wear purple to help raise awareness, with many people sharing their pictures. Blackpool Tower and the Marine Hall in Fleetwood were both lit up purple for the night. Three of the team also spent the afternoon in Blackpool Victoria Hospital handing out awareness material as well as speaking to medical professionals and members of the public. The response was fantastic with over 250 leaflets being distributed. AT have been asked to attend a meeting with the physiotherapy team where they will help to educate them on living with aspergillosis.

AT have also been working hard to get their patient information leaflets translated into 30 different languages and are hoping to have this work finished by the end of February. They will then begin the hard work of getting them online so both patients and medical professionals can access and download them.

The MNT association Mon Poumon Mon Air is organising a video conference for patients and professionals on 12 March. The conference is titled “Alliance Maladies Rares – La (dé)nutrition” and will be held in French. Speakers include Fanny Clavier from the Rare Diseases Alliance and Professor Eric Fontaine, a nutritionist at Grenoble University Hospital.

Illness upsets the balance we have built up over the years with those closest to us: too present, too distant, too much in the way of advice or help. It also upsets our self-image and the place we once held, generating uncertainty, fear and sometimes even anger.  In this context, relationships with those around us are bound to be destabilised before a new balance is found.  Through the experiences of others, the difficulties they have encountered and the solutions they have found, let’s look at how to communicate differently and regain this new balance as quickly as possible!

The conference will take place 16–17 May 2024 in San Diego, California. The format is hybrid, with in-person and virtual attendance available for most sessions, covering topics that patients have expressed great interest in and a need for more information. NTM Info & Research look forward to reconnecting with old friends and making new ones. Register today!

PHA US celebrates the 10th anniversary of its accreditation program for Pulmonary Hypertension (PH) care centres. Today, there are more than 85 accredited care centres, and 20 more applications are under review. Accredited centres must have resources to treat all forms of PH, such as cohesive medical teams, institutional support for the PH program and verification that clinicians accurately diagnose and appropriately treat PH. Although this is the 10th anniversary, 2023 gave PHA US many reasons to celebrate their care centre program. They made more site visits and reviewed more centres for reaccreditation last year than in any previous year. Also in 2023, two hospitals expanded their accreditation status from Regional Clinical Programs to Centers of Comprehensive Care. Ascension St. Vincent in Indianapolis and Yale New Haven Hospital in Connecticut are the first regional programs to become comprehensive care centres. Picture: Yale New Haven pulmonary vascular disease team.

FORMENTERA is once again the scene of this unique event that combines solidarity, coexistence, good vibes and, of course, swimming in its incredible waters. Will you join Respiralia for this event?

Action for Pulmonary Fibrosis (APF), a patient organisation in the UK, are running a small discussion group to hear your views about research and involvement so that we can build a network which ensures that research meets the needs of everyone affected by pulmonary fibrosis. Whether you are a patient, carer, or loved one, we want to hear your thoughts. The provisional date is Monday 11 March 2024, 10:00–12:30. The discussion will be online and will be informal. If you can attend or are interested in our work, please contact involvement@actionpf.org.