Patient Organisation Round-up: July 2023

The Aspergillosis Trust celebrates 2 years of being a charity

The Aspergillosis Trust have been celebrating 2 years of being a charity. They have exceeded their expectations and are growing daily. They have had many other highlights and work over the past month includes:

  • The Trust have been getting involved in different studies concerning damp and mould in housing. They hope to produce more materials that will help raise awareness of this condition.
  • With the money raised this year they are planning to translate their leaflets into a range of different languages.
  • The Daily Mail recently wrote an article with one of the Trust’s co-founders on antifungal resistance, which is a big concern to those with aspergillosis as the treatment options seem to be reducing.
  • Many at the Trust are taking part in a Citizen Science project on antifungal resistance with MARAf UK (Monitoring for azole-resistant Aspergillus fumigatus).
  • The Sweeney family had a family run the Belfast marathon in memory of their mum and wife who sadly passed away last year. They raised an amazing amount of money for the Aspergillosis Trust. They also had a runner in the London Marathon and have five runners taking part in the Royal Parks Half Marathon later in the year.
  • The Trust has made a video with a specialist dietitian, as many with aspergillosis and bronchiectasis have problems keeping weight on.
PAHSSc celebrates the 60th anniversary of the first successful lung transplant

On June 11 1963, Dr James D. Hardy led a team at the University of Mississippi Medical Center, including Dr Fikri Alican from Turkey, in successfully performing the world’s first lung transplant. To celebrate its 60th anniversary, Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc) declared this day as ‘Lung Transplant Day’. In collaboration with Kartal Koşuyolu YEAH Lung Transplant Center, they organised an event. To commemorate the occasion, the General Directorate of Highways supported them by illuminating the Bosphorus bridges of Istanbul in purple for lung transplant awareness. The day commenced with a boat trip on the Istanbul Bosphorus, attended by prominent lung transplant surgeons, organ donation coordinators, PAHSSc representatives, volunteer doctors, the press, and fortunate lung-transplant recipients. The lead surgeon paid tribute to Dr Alican and provided a brief overview of lung transplantation. Olcay Soykan, PAHSSc’s Vice-President, emphasised the lack of lung transplants for children under 14 in Turkey and the need for action. The doctors discussed lung diseases and the importance of lung transplantation, while organ donation coordinators stressed the significance of organ donation. Wish lanterns were released, symbolising the wish for speedy organ matches. They also donated a Portable Oxygen Concentrator to a lung transplant candidate. The night concluded with uplifting songs sung by all guests, accompanied by guitarists.

An ALK+ UK success story!

A recent ALK+ UK success story led to the creation of a new DNR Decisions Guide. In April, an ALK+ UK member, Paul, reported that during a routine visit to his local hospital he had been approached by a doctor who insisted he should be on the Do Not Resuscitate (DNR) Register due to his cancer diagnosis. Despite Paul’s objections the doctor completed and filed the necessary paperwork. Unfortunately, the charity has noticed a trend of misguidance surrounding DNR decisions, especially among medical teams unfamiliar with ALK+.  Paul lodged a complaint and reached out to ALK+ UK. Its Medical and Scientific Panel were able to provide valuable advice which helped Paul to successfully reverse the decision. As a result of this incident, the panel rapidly created and published a DNR Decisions guideline document. Paul’s story highlights the significance of this new paper; it serves as a valuable resource for healthcare professionals, patients, and families, providing comprehensive information on navigating DNR decisions in the context of ALK+ Lung Cancer. This success not only benefits Paul personally but also sets a precedent for compassionate and informed care for all ALK+ Lung Cancer patients.

Paul, member of  ALK+ UK.

How fit are your lungs? Spirometry in shopping malls with the Austrian Lung Union

Spirometry is key to diagnosing asthma, COPD and other lung diseases. It is also important to check lung function after a COVID-19 infection. Research by the Austrian Lung Union showed that only 60% of men and 50% of women in Austria have ever had a lung function test. But more than 70% know their blood sugar and more than 90% know their blood pressure. As breathing is so vital the Union want spirometry to be included in every preventive medical check-up and to be reimbursed at GP level.

World famous chef Alain Roux appointed Patron of the Pulmonary Fibrosis Trust

The Pulmonary Fibrosis Trust are delighted to announce the new Patron of the Charity — Chef Alain Roux. Chef Alain, a world famous and celebrated chef, takes on the patronage in memory of his father, Michel Roux OBE, founder of world famous The Waterside Inn, who died in March 2020 from idiopathic pulmonary fibrosis. Chef Alain met recently with the Trust Chair, Peter Bryce, and said: “Having witnessed my father suffer the disease, I care passionately about supporting the [Pulmonary Fibrosis] Trust’s efforts to try to help sufferers and their families and to improve treatments. It seems to be an illness that many people suffer but so many do not understand or know about it.”


PCD Support UK provides physio packs for children with PCD

PCD Support UK were thrilled to be able to assist children and families with PCD by contributing to the cost of children’s kits for PCD patients at the Leeds Teaching Hospital. They were able to purchase blowing games, single-use equipment, and a tiny information card for 80 packets thanks to the £150 supplied by PCD Support UK (see photo below). In the future, all newly diagnosed patients and children between the ages of 3 and 10 will receive these kits at their yearly review sessions in the north of England. PCD Support UK are so grateful for all who fundraise for them to allow them to support those with PCD. If you wish to donate, please use the “Donate” button at the top of this page.

Sevilla Respira participated in the 6th SEPAR Forum

The President of Sevilla Respira participated as a moderator at the 6th SEPAR forum for patients with respiratory diseases on 9 June. Previously, on 8 June, Sevilla Respira attended the training course for patient associations given by SEPAR. They found it very enriching to share knowledge with other associations and to receive training from experts.

Respiriamo Insieme
  • Respiriamo Insieme (RI) was one of the 23 winning projects of the 3rd edition of the «Fondazione Roche per i pazienti – accanto a chi si prende cura»! (“Roche Foundation for Patients — alongside caregivers”) call. The winning project from RI was “HELP-ON”, an extra-clinical specialist counselling service for patients with progressive fibrosing interstitial lung disease (ILD) and idiopathic pulmonary fibrosis (IPF).
  • The most engaging phase of the Device4Patients project kicked off with the first webinar on the calendar within the Respiriamo Insieme Hub educazionale In-formativo (Educational In-training Hub). The first Virtual Classroom held was on “Dispositivi: pMDI e pMDI con camera spaziatrice” (“Devices: pMDI and pMDI with spacer or VHC”) and was held on 13 June with specialists Dr Martina Santamborgio, a respiratory physiotherapist with a master’s degree in respiratory physiotherapy and rehabilitation; Dr Carlo Barbetta, pneumologist in charge of the Educational, Epidemiology and Prevention Study Group of the Italian Association of Hospital Pneumologists (AIPO), and President Dr Simona Barbaglia. This unique opportunity to increase patients’ knowledge on the proper use of inhalation therapy management devices and to interact directly with qualified professionals was then repeated on 27 June with Dr Sara Mariani and Prof. Gianna Camiciottoli.
  • Respiriamo Insieme was present at the “Summer Party” held at the IRCCS Istituto Maugeri in Bari where they have been accredited since 2019. They met, discussed and shared a festive day with all the patients hospitalised at the Institute.
  • Respiriamo Insieme was an active participant in Milan at the public meeting  “La Disabilità Respiratoria: Impatto Clinico, Sociale Ed Economico in Regione Lombardia. Quale Fabbisogno Riabilitativo?” (“Respiratory Disability: Clinical, Social And Economic Impact in the Lombardia Region. Rehabilitative Needs”). Respiriamo Insieme brought the voice of patients and the critical issues they face in accessing respiratory physiotherapy every day and collaborated with all other health professionals present at the event to build new responses to this need for care.

FairLife LCC
  • FairLife Lung Cancer Care (L.C.C.) hosted a webinar on the stigma of lung cancer associated with smoking. Following the launch of the campaign “Ask the Right Question”, FairLife L.C.C. raised public awareness of stereotypes responsible for inequalities in healthcare. Nineteen speakers highlighted the socio-economic implications of stigma and the impact on people living with lung cancer.
  • FairLife L.C.C. sponsored the new book “Breath of Life”, written by Christos Apostolakos, a stage IV lung cancer patient, in which he shares thoughts and emotions throughout his lung cancer journey. The book “Breath of Life” speaks about optimism, the will to live and positive energy as the way to stand up to cancer. Profits from the book will support FairLife L.C.C.’s Psychosocial Support Programme BREATH.
  • To mark World No Tobacco Day 2023, FairLife L.C.C. supported and attended a press briefing regarding the presentation of the proposed Lung Cancer Screening Program in Greece by the Hellenic Thoracic Society and other scientific institutions.
  • FairLife L.C.C. participated in the 13th Annual Capital Link Sustainability Forum in an opportunity to showcase and communicate its actions.

GAAPP Scientific Meeting and AGM

Global Allergy & Airways Patient Platform (GAAPP) celebrated its annual Scientific Meeting and AGM in Hamburg (Germany) in the before the European Academy of Allergy and Clinical Immunology (EAACI) conference with a record number of in-person and online participants. They provided patient-friendly updates on the latest therapies and research in urticaria, eczema, food allergies, asthma & COPD. You can watch a replay on the GAAPP website.

Italian Bronchiectasis Association attended PneumoLogica

From 9–11 June, Italian Bronchiectasis Association (AIB) participated in the “PneumoLogica” congress in Bari, Italy. PneumoLogica is a national congress dedicated to pneumology. It was an important time for the many patient organisations and clinical professionals to meet to continue supporting their members.

AAIDA host a webinar for World Bronchiectasis Day

The Awareness for Immune Disorders Association (AAIDA) is excited to have partnered with Global Allergy and Airways Patient Platform (GAAPP) for a special educational webinar on the 2nd annual World Bronchiectasis Day.

NTM Info & Research announce the first World NTM Awareness Day

NTM Info & Research (NTMir) are proud to announce the first World NTM Awareness Day on August 4th, 2023. For twenty years, NTMir has been committed to supporting patients with nontuberculous mycobacterial (NTM) disease, their caregivers and healthcare providers with medical education and research. NTMir recognises the continuing increase in cases and the need for information, support and resources for those affected by this disease. The inaugural World NTM Awareness Day aspires to raise awareness of the resources available to patients and increase early testing to avoid delayed diagnosis. Stay tuned for more information!