There have been several awareness days related to respiratory health in recent weeks. Patient organisations across Europe have been busy organising projects and taking part in activities to raise awareness of these conditions and support those affected by them.
In collaboration with its partner association Respiriamo Insieme, Associazione Italiana Bronchiettasie (AIB) launched an important project, presented in several cities in Italy. The project aimed to support people with lung conditions to use IT tools, to help improve telemedicine and new communication channels, not only for the COVID-19 pandemic but also for the future.
Shane Fitch, CEO and Founder of Lovexair Foundation, was invited to participate in the European Alpha-1 Awareness Day event “Improving care for Alpha-1 patients” by Alpha-1 Global to represent the Patient Perspective. It was hosted by MEP Isabel Wiseler-Lima (EPP, Luxembourg) and co-hosted by MEP Marisa Matias (GUE/NGL, Portugal).
Within the context of the 2021 European Alpha-1 Awareness month, Alpha-1 Global was pleased to collaborate with members of the European Parliament in organising this high-level political discussion.
The National Association Sarcoidosis (NAS) was involved in activities throughout April for the month of sarcoidosis awareness. Due to the COVID-19 pandemic, the situation is a little different: this year they mainly focused on spreading information about COVID-19, as well as personal experiences of patients with sarcoidosis who have already contracted the virus and can share their experience with the rest of the community. They have been closely following the guidance on vaccines in general and in particular for patients with sarcoidosis: what is the advice of medical specialists on whether to get vaccinated or not, under what conditions and which type of vaccine is best suited for patients with this condition?
Since 4 April, there has been an ongoing public discussion regarding changes to the Ordinance on the Medical Expertise, which is very important for people with disabilities. NAS considered the proposed changes and also discussed them and submitted their opinion on the topic to the Ministry of Health and the Council of Ministers of the Republic of Bulgaria.
Throughout April, the Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) in Turkey has been preparing for World Pulmonary Hypertension (PH) Day on 5 May 2021. They continued their Instagram series of patient stories. They started an online pulmonary rehabilitation programme by a physiotherapist for patients. Once again, PAHSSc donated oxygen concentrators and nebulizers to those patients who could not afford them. They also spent time defining and redefining their values, mission and vision.
One of the Pulmonary Fibrosis (PF) Trust’s Ambassadors, Ben Drake, has written, recorded and now released a song in memory of his father, who passed away in 2018 from PF. The song is called There, and all proceeds will go to the Pulmonary Fibrosis Trust.
