The past month has been very exciting for many organisations who have been able to start meeting face-to-face again for the first time since the COVID-19 pandemic.
APEPOC (Asociación de Pacientes con Enfermedad Pulmonar Obstructiva Crónica / Spanish COPD Patients Association) has started a tour of visits throughout most of Spain to recognise the work of public institutions and politicians who approved initiatives aimed at improving the quality of life of COPD patients during the pandemic. These figures helped facilitate access to the best medical treatments, triple inhalation therapy and eliminate the prescription visa.
EURORDIS (Rare Diseases Europe) has partnered with AirBnB to provide 30 days of free housing abroad for members of the Ukrainian rare disease community who are fleeing the country. This applies to any family affected by a rare disease.
If you know a Ukrainian refugee who is in need of a safe place to stay outside of Ukraine, please make sure to share this link.
Alfa1 España (Alpha-1 Spain) held their first National Meeting of Patients and Families with Alpha-1 Antitrypsin Deficiency (AATD) in Alcalá de Henares since before the COVID-19 pandemic. It was as useful as it was emotional for the attendees. Useful because during a whole day it was possible to update knowledge about AATD, its treatments and the current situation of care for those who suffer from it. And emotional because after two hard years of isolation through the COVID-19 pandemic, alphas from all over Spain were able to meet face-to-face again.
GAAPP (Global Allergy & Airways Patient Platform), now led by the new Executive Director, Lindsay De Santis, will be conducting their annual capacity-building webinars from 4 May to 8 June 2022. This year they will offer six webinars in English and Spanish brought to their community by key experts for each topic. They will provide training on digital-era marketing, grant writing, staff development, financial management, patient access to clinical trials and patient-centered outcomes research.
Register for free: https://gaapp.org/gaapp-academy-2022/
25 April is European Alpha-1 Awareness Day, a date on which those affected with the genetic condition Alpha-1 Antitrypsin Deficiency (AATD) come together as one community to share their stories, experiences and hardships. The Lovexair Foundation joins this global effort to provide information on this genetic condition in order to achieve increased rates of detection and diagnosis, and ultimately achieve greater access to treatment for those affected by AATD.
See Arran Strong’s message as an Alpha-1 patient and HappyAir Ambassador.
Aspergillosis Trust has been busy promoting their work and objectives on social media and through making new contacts both virtually and face-to-face.
The Trust has released their new patient information leaflets which can be downloaded in PDF format at aspergillosistrust.org/leaflets-guides. They also have physical copies which can be ordered from https://www.aspergillosistrust.org/contact
During World Immunization Week 2022, FENAER (Federación Española de Asociaciones de Pacientes Alérgicos y con Enfermedades Respiratorias / Spanish Federation of Allergy and Airways Diseases Patients’ Associations) launched the campaign ‘The enemy is the disease, not the vaccine’, to highlight the positive influence that vaccines have had on the evolution of the human species. It aims to encourage the population to become immunised against widespread diseases and disprove some of the myths that have been created around vaccines.
As part of the European Patients’ Rights Day and World Asthma Day, FFAAIR (Fédération Française des associations & amicales des malades insuffisants ou handicapés respiratpores / French Federation of Associations of Respiratory Patients) organised for the first time a hybrid meeting in the patients’ club “Right to breathe” in the Pulmonology House on 21 April 2022. Attendees listened to the presentation of French laboratory Neovacs, which is working to create a vaccine to cure asthma. The scientists want to involve patients from the beginning.
They had a panel discussion: “Closing the gaps in asthma care – the theme of World Asthma Day 2022”:
On 23 April, PAHSSc (Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği / Pulmonary Hypertension and Scleroderma Patient Association) celebrated Children’s Day, which was established by the first President of Turkey, Ataturk, in 1923. They organised an online celebration “All the Colors of the World” for the child patients, who showed off their musical, reading and manual skills.
PAHSSc again advocated for cheaper electricity for patients that need devices at home by speaking to Deutchse Welle in Turkish. They also provided a wheelchair to a patient and a portable oxygen concentrator to another patient.
For the upcoming World PH Day (5 May 2022), PAHSSc is organising “Music In the Air – for World PH Day”. The event will take place on 14 May 2022 at 12:00 CEST. PAHSSc invites you to join them for an online musical event led by music therapist Danny Kora. No prior musical experience is needed. Just be prepared to meet new people and have fun! To register, email firstname.lastname@example.org with “May 14” written in the subject line.
Associazione Italiana Bronchiettasie (AIB/Italian Bronchiectasis Association) has finished organising its webinars dedicated to scientific information with specialists – online meetings will start soon. AIB will also soon hold their annual members meeting.
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