Patient Organisation Round-up: April 2023

Catch up on the latest news from patient organisations in our network.

Proposal to recognise Sleep Apnoea as a chronic disease presented at a press conference in the Italian Chamber of Deputies.

The Italian Sleep Apnoea Association worked with the Hon. Varchi (first signatory) to define a law proposal that recognises sleep apnoea as a chronic disease and that can make the cost of diagnosis free. It also proposed recognising mandibular advancement device (MAD) therapy, creating a pathology registry, special protection at work and creating diagnostic and treatment pathways according to the chronic care model.

PCD Support UK vice-chair speaks about his experience of living with PCD as a British-Pakistani Muslim

“There are many people in my family who don’t understand [PCD]. My grandparents were very scared for me because they didn’t understand the condition. Other people in my family didn’t really think it was real. Perceptions [of PCD] in my family have changed because they’ve seen me talk about it.”

Our Vice-Chair Abdullah Ihsan recently spoke with Rarely Heard podcast about his experience of living with PCD as a British-Pakistani Muslim. In this inspirational conversation he discusses the positive impact of PCD services on his health, cultural expectations from within his own community, and how he has dealt with questions about fertility. He explains how finding other men to talk about PCD with can be a challenge and why it is important to spread the word about this disease.

Workshops from the June Hancock Mesothelioma Research Fund

Patients are at the heart of everything the June Hancock Mesothelioma Research Fund (JHMRF) does.  Mesothelioma is a rare, asbestos-related thoracic cancer.  It’s a challenging condition and the JHMRF want to ensure the patient’s voice is heard throughout the whole process of research.  In 2019 the JHMRF offered a grant to develop patient involvement in mesothelioma research and funded a study at the University of Surrey, led by Dr Afrodita Marcu.  The study explored patients’ needs and expectations for involvement, as well as researchers’ perceptions of the barriers and facilitators to involving patients in mesothelioma research.

A series of online workshops, carried out with patients and carers, aimed to support participants to develop their understanding of research and their skills as patient representatives.  Modules from ELF’s European Patient Ambassador Programme (EPAP) were part of the process. The study led to the formation of the Me-So-Involved group, which has already contributed to a Scottish Medicines Consortium consultation on immunotherapy for mesothelioma and advised on research proposals to JHMRF and Breakthrough Cancer Research, an Irish cancer research charity. A full report of the study is now available at BMC Research Involvement and Engagement.

Foundation for Sarcoidosis Research takes action in April’s awareness month for the 175k+ people living with sarcoidosis

The Foundation for Sarcoidosis Research (FSR) is proud to launch the Stand Up for Sarc Campaign this April as part of National Sarcoidosis Awareness Month. As part of the Stand Up For Sarc Campaign, FSR is sharing a pledge for the community to commit to raising awareness of sarcoidosis and learn about ways to get involved and create change, including sharing their story, participating in clinical studies and FSR Patient Registry to increase research efforts, advocating for improved legislation, and raising funds through the month-long Steps for Sarc Awareness and Fundraising Challenge to help advance FSR’s research, education, and patient support programs.

2nd Annual global Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) Awareness Day aims to improve patient-provider communication in CRSwNP

Could the implementation of a new lay language term be key in improving patient-provider communication in chronic rhinosinusitis with nasal polyps?

In 2022 EUFOREA launched its first Global Rhinosinusitis with Nasal Polyps Awareness Day, which was part of a broader strategy to raise awareness of this debilitating and often underdiagnosed disease of the paranasal sinuses among both patients and healthcare providers. Although it is a common condition, chronic rhinosinusitis is often overlooked in policy discussions or it is mixed in with other comorbid conditions such as asthma.

One major issue that continues to be raised and widely appreciated is that the name chronic rhinosinusitis with nasal polyps (or CRSwNP) isn’t easy to pronounce and isn’t widely understood by the patient community. This year, EUFOREA’s Global CRSwNP Awareness Day aims to build on the work already done to improve communication between patients and their healthcare providers in an effort to achieve optimal outcomes for all patients. Watch the debate here!

Launch of new pharmacy lung cancer support cards

On 1 March, ALK Positive Lung Cancer UK launched their ‘Pharmacy Card’ initiative nationwide! The trifold business cards, which contain information on key UK lung cancer charities that provide support and advocacy for lung cancer patients, are now available to lung cancer patients at hospital on-site pharmacies, so that patients can easily collect a card when picking up their medication. The cards are part of an initiative to increase awareness of the support available to lung cancer patients. Alison Burgin, Lead Oncology Pharmacist at the Royal Surrey County Hospital, has been involved in the development of this resource, alongside Debra Montague, ALK Positive UK’s Chair. The initiative has received support from BOPA (the British Oncology Pharmacy Association).

Alpha-1 Global Patient Congress

The Alpha-1 5th Global Research Conference & 8th Patient Congress is the largest international gathering of people with Alpha-1, their families, leading researchers, healthcare professionals and industry in the world. Alpha-1 antitrypsin deficiency is a genetic condition that can cause lung, liver and skin disease. The conference in Dublin, Ireland is a two-day event with educational programmes given by national experts and leaders in the Alpha-1 field. The conference provides attendees with the opportunity to network and increase their understanding of Alpha-1. The event is being organised by the US Alpha-1 Foundation with some local assistance from Alpha-1 Foundation Ireland.

GAAPP Academy: Volunteer Management

This GAAPP Academy session discussed volunteer management with the expert input of Sukhendra Rompally, director at Chezuba. The session covers how to access global talent using virtual volunteering and leverage gamification to engage Millennial and GenZ volunteers, and the role of technology in delivering a seamless volunteering experience. The session can be watched on YouTube now.

Sarcoidosis Patient Day 2023 – registration now open

SarcoidosisUK is thrilled to announce that registration is now open for the SarcoidosisUK and Royal Brompton & Harefield Hospitals virtual Sarcoidosis Patient Day! Join them on 27 April 2023 (10:00 – 14:00 BST), where we will hear from a variety of leading sarcoidosis specialists on a range of topics, with five different patient-centred sessions.

The Spanish-Irish Business Network raises €26,000 for Alpha-1 Deficiency patients

The Spanish Irish Business Network raised €26,000 for Alpha-1 Deficiency patient associations in Spain and Ireland at their St. Patrick’s Day Charity Ball. The event was held on March 17 in Madrid with the presence of the Irish ambassador in Spain.

National Transplant Day event addresses new ways of providing transplants to the most complex patients

The Union of Solid Organ Transplant Federations (UTXs), made up of the National Federation for the Fight against Kidney Diseases (ALCER), the Spanish Federation of Heart Transplant Patients (FETCO), the National Federation of Liver Patients and Transplant Patients (FNETH) and the Spanish Federation of Cystic Fibrosis (FEFQ), celebrated National Transplant Day on 29 March, with the collaboration of the National Transplant Organisation (ONT) and the ONCE Foundation. The event focused on new ways to provide organ transplants to the most complex patients. “Improvements in medical management and surgical approaches are opening up new opportunities for patients who previously would have had difficult access to a transplant. Patient associations take advantage of Transplant Day to thank the professionals who make these advances possible,” said Juan Da Silva, president of the FEFQ. The aim of this day was to recognise all the healthcare professionals who make transplantation possible. The great work they do has allowed, in 2022, a growth of 13% in transplantation and 15% in organ donation compared to 2021. Spain maintains an internationally privileged position in organ donation and transplantation.

Webinars on PH for family doctors and paediatricians

Ukrainian pulmonary hypertension (PH) association PHURDA started a new awareness project “About Pulmonary Hypertension for family doctors”. Since January, every month we have held educational webinars about PH for family doctors. We invite different specialists to cover various topics related to pulmonary hypertension. We have already discussed the following topics:

  • The last PH recommendations
  • Idiopathic PH, hereditary PH and PH associated with drugs and toxins
  • Rare diseases in Ukraine
  • Congenital heart diseases in children and adults.

The aim of this project is to teach family doctors to understand pulmonary hypertension so that they can see the disease at an earlier stage. As a result, this will give the patients better prognosis.