Patient organisation round-up: May 2021

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.

Respiriamo Insieme gets involved in awareness day activities and launches IT skills course and patient survey

  • For World Fitness Day and World Health Day this year, Respiriamo Insieme hosted an event called Breath Relay – a live streaming event to promote physical activity as part of their project #HoLAsmaEFaccioSport (#IHaveAsthmaAndPractiseSport). Find out more.
  • With the help and support of their medical committee, Respiriamo Insieme launched a survey on severe asthma for patients. The data obtained will be used to help their members and patients. Find out more.
  • On 28 April, Respiriamo Insieme started courses on IT skills courses for patients with respiratory conditions who are not comfortable with computers. The objective is to help patients find it easier to access Digital Health Services. Find out more.
  • Ahead of World Asthma Day (5 May 2021), Respiriamo Insieme invited people to make memes on how it is to live with asthma. The best one will be announced on World Asthma Day and the winner will receive a prize of concert tickets.

Associazione Italiana Bronchiettasie collaborates with Respiraiamo Insieme on IT skills course

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.

Find out more.

Lovexair Founder participates in event ‘Improving care for Alpha-1 patients’ for European Alpha-1 Awareness Month

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.

National Association Sarcoidosis Bulgaria shares sarcoidosis patients’ experiences of COVID-19

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.

PAHSSC prepares for World PH Day

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.

Find out more.

GAAPP takes part in IPCRG World Conference and published information on asthma and immunology for awareness days

  • For World Asthma Day, the Global Asthma & Allergy Patient Platform (GAAPP) has been asking international experts about the most common asthma misconceptions and the truth – they have been published here:
  • GAAPP will have a virtual booth at the 10th IPCRG (International Primary Care Respiratory Group) World Conference from Thursday 6 to Saturday 8 May 2021.
  • On World Immunology Day, GAAPP started to raise awareness for Eosinophil-Driven Diseases – see their video and more educational info:

Pulmonary Fibrosis Trust Ambassador releases song in memory of his father

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.

Download the song.