Patient Organisation Round-up: May 2024

Cystic Fibrosis Europe is excited to announce the expansion of the Twinning Project, in collaboration with European Cystic Fibrosis Society and thanks to the support of the Cystic Fibrosis Foundation. The Twinning Expansion Project aims to build up friendships and partnerships between CF communities in different countries. It does so, first of all, by twinning one expert CF centre with a long-term outstanding history in CF care known as the “mentor site” to a “mentee site”, a centre with the ambition to improve clinical outcomes through the guidance, advice and collaboration of a well-established CF centre. Nine twins were established in 2020. After launching a new call to CF care providers in Europe last year, they had an impressive number of applications. The Twinning Expansion Project team is pleased to announce 21 new mentee CF Centres being mentored by 19 CF Centres. You can find out more on Cystic Fibrosis Europe (CFE) and European Cystic Fibrosis Society (ECFS) websites.

The Spanish Alpha-1 community commemorated European Alpha-1 Day (25 April) by giving visibility to patients through information tables in almost twenty hospitals throughout Spain. In addition, Alfa-1 Spain held a meeting in the city of Zamora that brought together fifty patients, caregivers and specialists.

ALK+ UK has announced the appointment of Rebecca Welsh as their new Charity Manager. With a career that includes experience at The Prince’s Trust and expertise in operations and marketing strategy, Rebecca brings a wealth of knowledge and a proven track record to her new role. Rebecca’s background makes her perfectly suited for the challenges and opportunities in supporting and advocating for ALK+ patients. Her previous roles have honed her skills in strategic planning and execution, making her an ideal leader to help advance the mission of ALK+ UK.  Rebecca is enthusiastic about her new position, stating, “I am excited to contribute to the board’s ambitious plans and to make a meaningful difference in the lives of our patients.”

Last month, the Alpha-1 Europe Alliance organised an awareness-raising campaign in honour of European Alpha-1 Awareness Day held on 25 April of each year. The theme was #UnitedforAlpha1, which calls on the reason for existence of the Alliance: to unite European stakeholders in addressing the unmet needs of the alpha-1 patient community in Europe. The campaign targeted the public to increase awareness of this rare condition and encourage early detection and testing, individuals living with alpha-1. It encourages families and caregivers to encourage family testing and invite them to join their national alpha-1 patient group. The campaign targets healthcare professionals and other organisations to raise awareness and help highlight the access challenges to alpha-1 care and treatment at the European level. Over 20 organisations across Europe and globally actively participated in the campaign with content disseminated across several social media channels in 12 languages. You can learn more about the campaign, its messages, and calls to action by visiting the campaign page.

The National Association of COPD Patients (APEPOC) is travelling the roads of Spain with the ‘espironeta’ — a van with the necessary equipment to carry out spirometry tests with the aim of raising awareness of COPD. The ‘Healthy Lung Healthy Future on Wheels’ initiative was presented this Tuesday at a press conference at the Official College of Physicians of Madrid, organised by GK Laboratories. APEPOC educates patients about the importance of spirometry and how it can help detect respiratory problems before they become more serious. A reminder that spirometry tests are especially useful when combined with monitoring of symptoms such as cough, shortness of breath and fatigue. Nicole Hass from APEPOC said: “We can reach out to many people who are not yet patients to get the message across about the importance of staying ahead of respiratory diseases”.

On 24 April, EUFOREA celebrated its 3^rd annual Global Chronic Rhinosinusitis with Nasal Polyps Awareness Day with the theme “The Empowered Patient”. There was a patient led-panel discussion where patients shared their personal experiences with (Chronic Rhinosinusitis with Nasal Polyps) CRSwNP, highlighting the importance of patient empowerment and involvement in treatment decisions. Healthcare professionals also provided valuable insights into the clinical management of nasal polyp syndrome and discussed the importance of patient-centred care in improving health outcomes. They have also launched a new guide that includes:

• An overview of common symptoms associated with CRSwNP.
• A breakdown of different treatment options, including new therapies like biologics, with pros and cons for each.
• Insights into diagnostic tests.
• Practical tips for preparing for doctor’s appointments to maximise your time and ensure effective communication with your healthcare provider.

Most of the 455,000 yearly asthma-related deaths occur in low and middle-income countries, where asthma is under-diagnosed and under-treated. GAAPP provides a platform to amplify the voice of the people living without proper access to asthma care. Join them for #WorldAsthmaDay as they support this year’s theme: “Asthma Education Matters”, presented by GINA.

GAAPP has crafted an educational campaign with three key components:

1. Discover Personal Stories – Testimonials: Educate on others’ journeys.
2. Test Your Knowledge – Asthma Quiz: Educate by testing your knowledge.
3. Access Resources – Use these resources to better understand asthma and inform others about asthma basics and life with this disease.

The association MNT Mon Poumon Mon Air participated in the regional meetings for Alliance Maladies Rares — the national alliance for rare diseases. It was an opportunity to meet new people, patient associations and to get relevant information about rare diseases.

The Stichting Pulmonale Hypertensie / Pulmonary Hypertension Association of the Netherlands has expanded their website considerably with articles about different aspects of living with pulmonary hypertension:

🔹 Intimacy and sexuality

🔹 Studying with PH

🔹 Young adults and PH

🔹 PH and work

🔹 Financial issues

🔹 Nutrition

🔹 Travel and holidays

🔹 Children and PH

🔹 Exercise and sports

🔹 Government support at home

🔹 Benefits for disabled people

🔹 Information for caregivers

The Pulmonary Hypertension Association united with over 80 organisations globally on Sunday, May 5, to recognise World Pulmonary Hypertension Day. PHA Europe spearheaded the 2024 World PH Day campaign with a theme that underscores the importance of unity in addressing critical issues faced by those living with PH. The campaign aims to raise awareness through the following focused subthemes: United for Early Diagnosis; United for Hope; United for Access to Care; United for the Patients; and United for a Cure. PHA will highlight global PH voices and their unique experiences. In the U.S., PHA will host virtual legislative visits throughout May beginning on World PH Day. Advocates will discuss critical legislation with lawmakers, including the Supplemental Oxygen Reform Act, which removes supplemental oxygen from Medicare’s competitive bidding process, making oxygen and related equipment more accessible. PHA encourages the global PH community to raise awareness about key issues facing those with PH using resources from its World PH Day webpage. The page includes a digital toolkit with educational messages, images and other social media resources.

The Respiralia Group organised the workshop “Looking to the future of Cystic Fibrosis” with the collaboration of Chiesi, Santos Nixe Palace Hotel and Mia Restaurant. The speakers included speakers Dr Eva Polverino and Dr Amparo Solé. This workshop was designed for families to be able to address those doubts they have regarding the future of cystic fibrosis. Thanks to there being speakers with a wide variety of specialist knowledge, the workshop could address many topics, such as: bronchiectasis remaining in the airways even when taking Kaftrio, the importance of continuing treatment even when taking the modulators, the research projects already in the experimental phase that exist for people who do not have the F508del mutation, the advances and problems that exist in paediatrics, the problems of excess weight that are seen after taking Kaftrio and the importance of physical exercise in the treatment of cystic fibrosis.

The French Association for Primary Ciliary Dyskinesia (ADCP) had its first regional meeting of 2024 in March in the south of France. More than 30 people attended the event, benefitting from presentations, discussions and exchanges on PCD (Primary Ciliary Dyskinesia), with ADCP board members, PCD patients as well as physicians from Nice. The French association ADCP organises regular regional meetings to reach new members all over the country. Fruitful exchanges are always highly welcomed by families and patients of this rare disease.

The Alliance for Pulmonary Hypertension’s webinar on 29 April explored the surgical interventions for chronic thromboembolic pulmonary hypertension (CTEPH), a rare form of pulmonary hypertension. The latest ESC/ERS clinical guidelines for pulmonary hypertension advocate a multimodal therapeutic approach for CTEPH that includes pulmonary endarterectomy (PEA), balloon pulmonary angioplasty (BPA) and medical therapy. Two leading world experts, David Jenkins MS FRCS and Hiromi Matsubara MD PhD, discussed PEA and BPA respectively, and Rishabh Radhakrishnan, a young CTEPH patient, shared his first-hand experience of the condition and of having undergone BPA. The webinar was endorsed by the European Reference Network for Rare Lung Diseases, ERN-LUNG.

Mrs. Violeta Irene Gemma is the secretary and treasurer of the Association of Respiratory Patients of Malaga, ALERMA. This Association is currently chaired by its founder, Mrs. María Victoria Palomares Del Moral. It is a non-profit association founded in Malaga in January 2009 with the purpose of meeting the demands of people affected by all respiratory diseases. ALERMA is made up of a group of people affected by asthma, COPD, and other respiratory diseases, or family members whose concern is to be able to provide the best possible care to all people with these pathologies, so that they can have a quality of life comparable to any person who does not suffer from them.

Respiriamo Insieme and the Pneumology Operating Unit of the Cisanello Hospital in Pisa, with which the Association has been accredited since 2023, joined forces on 19 April to offer the public an afternoon of tests and information on severe asthma and uncontrolled asthma to learn about the optimal treatment for these diseases in the area of Pisa and its surroundings.

During the event, respiratory tests (like pheno and carbon monoxide for smokers and people subjected to passive smoking) and educational lectures on Severe Asthma and Uncontrolled Asthma were held.