Patient Organisation Round-up: August 2023

9 organisations in the ELF Patient Organisation Network shared updates with us this month.

Italian Bronchiectasis Association celebrates World Bronchiectasis Day

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.

Alliance for Pulmonary Hypertension introduces a new knowledge sharing initiative

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.

PCD Support UK goes to Alton Towers!

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.

More than 20 patient groups in Latin America met at SAREAL 2023

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+ UK is delighted to announce the appointment of its first CEO

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.

PHA Town Hall for Health Care Professionals

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.


Solidarity in the fight against Cystic Fibrosis (CF) in Mallorca

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.

Various activities from Respiriamo Insieme

Respiriamo Insieme has been involved in a variety of activities throughout the past month:

  • They supported World Bronchiectasis Day in collaboration with the Italian Bronchiectasis Association with an interview on 1 July. The interview aimed to explain in a few minutes this little-known but widespread respiratory disease. Increased awareness allows for a faster diagnosis, which can improve daily life for people with this condition that is still lacking a recognised pharmacological cure.
  • President of the Respiriamo Insieme Association, Simona Barbaglia, was interviewed by about severe asthma care and follow-up, community medicine, and technological innovation, which is now indispensable.
  • The third webinar of the Device4Patients project scheduled within the Respiriamo Insieme In-formational Educational Hub was held with great success. Through the Device4Patients project, patients can learn how to use their respiratory device properly to maximise its benefits and be able to breathe better.
  • The Respiriamo Insieme Association was enrolled in the General Register of Associations. Respiriamo Insieme – APS will therefore be called upon to represent patients suffering from allergic, respiratory, immunological and rare lung diseases in the Assembly Committees to contribute to the legislative process and to the definition of the more general political-programmatic guidelines of the Emilia-Romagna Region.