The past month has been very successful for many patient organisations across Europe and beyond. Read about the range of achievements made to strengthen the support for people affected by lung conditions.
The Lovexair Foundation opened their first HappyAir space in Madrid. Thanks to the University of San Pablo CEU and their Policlinic, they can now offer people a complete Check@ir. Check@air is an initial evaluation of a person’s key respiratory issues and physical condition with the Foundation’s respiratory physiotherapist team. Patients can go to the policlinic and get a spirometry test done or 6 minute walk test free of charge. Whether it is COPD, long-COVID or any lung condition, their aim is to help people get back on track and take their report to share with their clinical team, when they need it.
The centre enables Lovexair to hold group meetings, workshops and train health & life science students in digital healthcare support. For Lovexair, this is a milestone to sharing the most important journey in people’s health and wellbeing, on the road to recovery, coming out of a pandemic.
Aspergillosis Trust is pleased to announce that as of 7 June 2021 they are now a registered charity as well as a patient advocacy group, after a lot of hard work by a dedicated group of volunteers. They are the only charity worldwide for Aspergillosis run by patients for patients. They hope that with the continued support they have received in the past, they can move forward in the fight to raise awareness of aspergillosis in all its forms.
Please see www.aspergillosistrust.org for more information.
Members of Aspergillosis Trust were also involved in the first ELF Patient Advisory Group (PAG) meeting with the Chronic Pulmonary Aspergillosis research network (CPAnet).
The Spanish Patient Organisation of COPD (APEPOC) has been conducting this pioneering and prospective study of nutritional habits for six months in partnership with the European University of Miguel Cervantes (UEMC). The study aimed to improve the quality of life for people with COPD.
It has been demonstrated that there is an important link between COPD and nutrition, as nutrition influences the maintenance of a good quality of life for the patient.
An optimal nutritional status is crucial in this condition. Malnutrition and undernutrition affect respiratory function and respiratory muscles, which can lead to a worse prognosis (outcome) of COPD.
All the results of the survey and the infographics can be viewed here: Estudio nutricional de EPOC
One of the ambassadors of the Respiralia Foundation has created a challenge that consists of swimming across the Menorca Channel, which is between Menorca and Mallorca. Its aim is to raise awareness of cystic fibrosis and to raise funds for its treatment. To find out more about the event and to support it, follow this link: David Tripiana and his solidarity challenge at the Balearics (respiralia.org)
The Pulmonary Hypertension Association UK (PHA UK) is conducting a major piece of research to understand the impact of the COVID-19 pandemic on the UK’s pulmonary hypertension (PH) community. There are separate surveys for patients, parents / guardians of children with PH, and care givers / loved ones. More information, and the surveys, can be found here.
For World PH Day 2021 the Pulmonary Hypertension – Ukrainian Rare Disease Association (PHURDA) filmed short videos with commentaries of singers, musicians, artists, a TV channel director, a scientist in the field of medical law, a leader of a religious community, a director of the regional center of social services, heads of hospitals, doctors and educators in support of PH patients. They made a short film to make PH patients in Ukraine more visible and to spread information about PH in society.
As a part of World PH Day, PHURDA also filmed two informative videos. One of them outlines the problems and opportunities for PH patients with medicine. Another one discusses the problems and needs in transplantation and rehabilitation in Ukraine. Their informational partner The Pershyi Zahidnyi TV Channel announced World PH Day 2021 on TV and radio.
Throughout June, the Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) focused many of their activities around scleroderma awareness month. 2 June was a big day for them as they planned, organised and carried out a symposium on scleroderma in collaboration with three universities, leading doctors in this field, physiotherapists and of course patients and caregivers. Posters, announcements, relations with the healthcare workers, and the technical infrastructure of this online day were all done by their patients.
PAHSSc also attended a meeting organised by PHA International where the celebrations for 5 May, World PH Day in different countries were evaluated.
As usual, their online series of patient stories continued on their Instagram page with different voices, different illnesses and different cases.
The Global Allergy & Airways Patient Platform (GAAPP) will hold its Scientific Meeting and Annual General Meeting (AGM) on 9 July 2021. This year they will also elect the Board of Directors for a new 3-year-term.
GAAPP wants to encourage caregivers of children with asthma to participate in the ‘Paediatric Asthma in Real Life’ (PeARL) survey. PeARL is assessing how paediatric asthma is currently monitored worldwide, and what optimal monitoring should be like. Results of the 6-11 minute survey will be used together with the published evidence, to inform recommendations on paediatric asthma monitoring. Complete the survey.
Allergy & Asthma Organization of Kenya (AAOKENYA) has been involved in a range of successful projects and initiatives over the last few months.
Of notable success, they hosted patient group meetings to collect views for developing the Kenyan National Asthma Guidelines. Through this, being a member of a team of 15 experts writing asthma guidelines, the Founder and Chair of AAOKENYA organised a series of meetings in the five counties of their operation to ensure that the voice of the patients was included in the guidelines.
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