Patient organisation round-up, January 2015
This month, patient organisations across Europe have been organising and participating in a range of activities to raise awareness of the importance of lung health.
Patient Solidarity Day 2014 – a resounding success
The International Alliance of Patients Organisations (IAPO) ran a Patient Solidarity Day on 6 December, 2014 under the theme “One Voice. United. Universal” – a global event highlighting the importance of patient organisations coming together showing support and solidarity for each other.
More than 50 organisations from 32 countries came together to call for truly patient-centred healthcare available to all.
Mobile health system to be launched in Spain
Lovexair has been part of an initiative focused on promoting lung health in society in Spain for the last 3 years. As part of this, Lovexair has developed Educax Air, a mobile health (m-health) service model based on 15 years of experience working with people with chronic and rare diseases and observing their behaviour and adherence to self-help programmes. M-health is part of the wider healthcare development of e-health (healthcare supported by digital technology), and involves using mobile devices to monitor heath.
Educax Air: m-health will be piloted in spring this year in a clinical study in several Madrid hospitals.
Testimonies of people living with COPD
Federación Nacional de Asociaciones de Enfermedades Respiratorias (FENAER) have published video testimonies of people living with chronic obstructive pulmonary disease (COPD) on an interactive online medical centre website, which also gives daily tips for people with the condition.
On 3 December, 2014 FENAER also celebrated World Day of the Volunteer together with the Association for Asthma and Allergy (ALERMA).
Publication of findings on pulmonary arterial hypertension
The first in a series of articles funded by the Spanish National Pulmonary Hypertension Association about pulmonary arterial hypertension (PAH) has been published in Clinical Genetics, an international journal.
New EU asthma research project
The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) have announced that they, in conjunction with other organisations, including Asthma UK, will be involved in a new EU research project funded by Horizon 2020, the latest and biggest EU Commission research and innovation programme.
The project, MyAirCoach, looks into customised treatment for asthma, and will kick off this month in Thessaloniki, Greece.
Bushfire season sparks asthma warning
Bushfires in Australia cause an increased risk of breathing difficulties for asthma sufferers, warns the National Asthma Council Australia.
Every year during the summer months in Australia, people with asthma are being advised to have their medication with them at all times and to agree a personal asthma action plan with their doctor. This can be stored and accessed on smartphones via the Asthma Buddy app.
Obliterative bronchiolitis week – webinar topics wanted
Breathtakers Obliterative Bronchiolitis (OB) Trust are holding the first worldwide OB awareness week from 9–15 March, 2015 in conjunction with chiLD USA. They hope this will then become an annual event.
As part of the week, there will be a number of awareness events both in the UK and in the USA, including webinars with professionals who have agreed to take part in online discussions.
Breathtakers OB Trust are encouraging other countries to become involved and are inviting people to suggest topics for their webinars or to present a webinar.
Mobility scooter for person with pulmonary fibrosis
The Pulmonary Fibrosis Trust recently provided a mobility scooter for Sue MacDonald from Cambridge, who lives pulmonary fibrosis (PF). This enables Sue now to go out in the community, enjoying social contact and no longer being homebound.