Over the last month patient organisations across Europe have been busy organising and launching important webinars, events and campaigns to support people affected by lung conditions.
The Association for the Support of Patients with Pneumonia and their Families (NEUMOAI) in Spain launched the Worldwide Pneumonia Awareness Campaign – Pneumolight 2021 on 6 July. The campaign will last until 12 November, which will mark World Pneumonia Day.
The aim of the campaign is to educate people about pneumonia with some easy materials to understand. These materials include two educational videos explaining what pneumonia is, and six infographics that also explain pneumonia. The materials are in eight languages (Spanish, Italian, French, Portuguese, Russian, Chinese, Arabic, English).
NEUMOAI are sharing all the materials on social media and also invited authorities around the world to support the campaign and share in among their networks.
Find out more about the campaign and access the materials
Read our interview with Catia Cilloniz who is the coordinator for Pneumolight.
The Spanish Society of Pulmonology and Thoracic Surgery (SEPAR) has begun their fourth Annual Congress of respiratory patients, named “Breathing together”. The Congress was organised to take place in two parts; the first part took place on 17 June and the second part will take place on 14 October.
In the first part of the Congress, 300 patients, family members and professionals participated. More information about the Congress and the recording with all the presentations from the first part is available on their website: https://www.separ.es/node/1726
The Spanish Association of COPD Patients (APEPOC) and the Spanish Foundation of Pneumology (NEUMOMADRID) have conducted a large population-based, descriptive, cross-sectional study to assess the impact of COVID-19 on the health of chronic respiratory patients and the changes that have occurred in their healthcare.
The results of the surveys revealed that the impact of the pandemic on COPD in Spain has been very important. 73% of COPD patients reported that their disease has worsened during the pandemic. 81% of healthcare professionals say that the healthcare provided to COPD patients has worsened.
The report includes the results and recommendations to return to normality.
Read more about the study and the results.
The Respiralia Foundation and the Cystic Fibrosis Balearic Association launched the first CO2 compensation project in the Balearic Islands: “Reforest Mallorca. Plant a tree, donate oxygen”. Reforest Mallorca. Plant a tree, donate oxygen (respiralia.org)
There are still places available to take part in the Swimming Tour around Formentera against Cystic Fibrosis. Register here to take part.
The Bronchiectasis Italian Association (AIB) held its second annual members meeting, during which members were informed about all the activities performed during the last year and what is coming up in the future, as well as the association’s annual financial report.
AIB also organised a free webinar focusing on safe travelling for people with bronchiectasis, as travel can often create uncertainty and anxiety for many reasons: remoteness from medical reference points, difficulties organising and moving therapies and fear for their own health. The webinar was lead by a respiratory rehabilitation physiotherapist and two travel operators on 21 July.
The COPD Italian Patients Association now has its own YouTube Channel. They will upload videos which will be of interest to people affected by COPD and other respiratory conditions. You can subscribe to receive notifications about page updates and to leave comments and suggestions.
July is a special month for Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) of Turkey as they celebrate their 30th anniversary and look back through the years to when there was only one patient and no disease specific drugs and doctors. The journey was a tough one, trying to raise awareness, approach health authorities, encourage doctors to focus on specific illnesses and educate patients.
In this proud and emotional month, they kept up their work through giving out oxygen concentrators, being a part of an international organ donation caricature contest, inviting a doctor for a talk on the World Scleroderma day and putting pressure on the parliament for a new law on disability.
The Aspergillosis Trust (AT) has created a ribbon to raise awareness of aspergillosis. They are available to buy on their website: https://aspergillosistrust.org/awareness-goods/
AT is delighted to be benefiting from a fundraiser event thanks to Yvonne Gibson who will be doing a parachute jump to raise money for AT and Brain Tumour Research, in memory of her husband. You can donate here.
The European Cancer Patient Coalition (ECPC) held a webinar on life after cancer, which aimed to provide an incentive for the formal establishment of an annual EU Cancer Survivorship Day. This campaign would follow the example of several national cancer survivorship days which bring together communities to recognise survivors and the challenges they face, and celebrate life after cancer. The Challenge Cancer Intergroup is committed to making the creation of an EU Cancer Survivorship Day become a reality.
Watch the recording of the webinar.
The European Organisation for Rare Diseases recently celebrated the 10-year anniversary of the NoRo Centre. The NoRo Centre is a centre of expertise and resource centre that offers social, therapeutic and medical services for people living with rare diseases in Romania.
Access the RoNo Centre: https://www.apwromania.ro/NoRo10
The Tuberculosis (TB) Europe Coalition (TBEC) is running a free pilot mentoring project starting in September to develop advocacy-related skills for civil society and advocates working on TB and TB co-morbidities such as HIV and viral hepatitis.
The course will run for 10 weeks starting in mid-September until the end of November. Sessions will consist of 6 lecture-based webinars with group discussion and 4 sessions of facilitated group work.
Applications must be made by 13 August 2021.
For more details about this opportunity please see here: https://www.tbcoalition.eu/eu-advocacy-mentoring-project/ or contact coordinator@tbcoalition.eu
On 9 July over 30 global patient advocates gathered for the Global Allergy and Airways Patient Platform (GAAPP) Annual Scientific Meeting. GAAPP expresses its gratitude to the speakers for their time and knowledge sharing. They also thank their members for their attendance.
On the same day, GAAPP also held its Annual General Meeting and Board Elections. They are pleased to present GAAPP’s newly elected Board of Directors: Tonya Winders – President; Kristine Whorlow AM – Vice President; Isaack Sunte – Secretary; Vanessa Foran – Vice Secretary; Otto Spranger – Treasurer and Dr. Ashok Gupta – Vice Treasurer.
