9 organisations in the ELF Patient Organisation Network shared updates with us this month.
On 1 July 2023, AIB-APS enthusiastically celebrated the second World Bronchiectasis Day. To spread awareness, they decided to create a cartoon based on a patient’s experience to post on their social media platforms. They also hosted an informative webinar about bronchiectasis, with the collaboration of Professor Aliberti, a member of their scientific committee. This was open to all patients with bronchiectasis.
The Alliance for Pulmonary Hypertension (AfPH), a non-profit patient association based in Brussels, Belgium, unveiled the “Pulmonary Hypertension Knowledge Sharing Platform” (PH-KSP) on World Pulmonary Hypertension Day, 5 May 2023. This patient-led initiative aims to foster information exchange and support within the community. The PH-KSP offers expert-curated resources in various formats and languages, and provides up-to-date news tailored to patients. The topics covered include research, clinical trials, treatments, surgical advancements, mental well-being, and lifestyle considerations. The platform also includes information on patient empowerment, emerging medical trends, and the evolving digital health landscape. Educational web events on pulmonary hypertension have been organised as part of the knowledge-sharing initiative. At the heart of the AfPH lies a profound belief in the transformative power of collective experience. By pooling their resources, sharing information, exchanging knowledge, and showcasing best practices, AfPH believe they can unlock tremendous value for the entire community.
On 15 July, after a long break due to the COVID-19 pandemic, the PCD community braved the weather to meet in person once again! PCD Support UK funded tickets for 120 people with PCD and their families and friends to enjoy a day of fun at Alton Towers. “We were incredibly happy to finally see old friends, and to meet new ones!” They set up a PCD Support UK room, fully stocked with refreshments for attendees and a full buffet lunch, and loaded with PCD Support UK merchandise. The priority of the day was minimising any risk of cross-infection, so efforts were made to keep the room well-ventilated and offer staggered lunch slots, so there was plenty of space for people to come and go through the day, but also a space for guests to mingle and meet other PCD patients and their families.
“Fantastic day out with our two girls, despite the rain! Such a good opportunity to meet others with PCD and talk about our own experiences,” says Frankie (9), Lola (3), and Sarah Bradshaw.
GAAPP and Latin Health Leaders organised the second edition of SAREAL, where more than 20 patient advocacy groups working in respiratory, allergy, and atopic diseases met on 11–12 August in Punta Cana, Dominican Republic. This 2-day event focused on increasing their capacity and disease portfolio, deciding a joint roadmap for advocacy and policy, and bringing the patient voice to ALAT scientific congress.
ALK Positive UK is delighted to announce the appointment of Duncan Edmonstone as its inaugural Chief Executive. Duncan is well-known within the ALK+ lung cancer community, as he is not only a fellow patient but is also a highly active and supportive member of the group. Having recently retired early from a senior executive position in the computer world, he brings a wealth of experience to his new role. He will be facilitating the charity’s transition from being principally volunteer run to establishing a strong and sustainable foundation for its future. ALK+ UK received 46 applications for the post and interviewed five. They felt that Duncan is ideally suited for the charity at this pivotal stage of its development. Duncan said, “I am honoured and humbled to be appointed to this role. I promise to work very hard to help move the charity on to its next phase”.
Picture shows Debra Montague, ALK+ UK Chair, welcoming Duncan Edmonstone to his new role.
The Pulmonary Hypertension Association US recently hosted a virtual town hall for health care professionals. The event, held on 12 July, explained PHA’s opportunities for health care professionals to further their understanding of PH and how to make the most of their roles as PH leaders. PHA shared its legislative priorities and how professionals can make an impact, such as visiting congressional offices. The meeting was an important opportunity to discuss the insight and experience that PHA’s professional members bring to the table. The discussion also included an explanation of how professionals could further the knowledge and education of their fellow medical professionals through PHA membership. Speakers shared information about how to apply for PHA research grants and access PHA Registry data for research. They also discussed the PHA-accreditation PH Care Center program, which has over 80 centers and is expanding. See the video for more information.
The second edition of the Cystic Fibrosis Strokes in Mallorca has been very special because it will be the last one held there. Next year, the Respiralia Foundation will go back to the original event in Formentera! This is Respiralia’s biggest event not only to raise awareness of the disease, but to raise money for the treatments that people with cystic fibrosis need.
Respiriamo Insieme has been involved in a variety of activities throughout the past month:
