Lovexair at the ERS 2017
ERS 2017 offers the unique opportunity to network with so many people from patient organizations, physicians, medical societies and industry and get up-to-date on each country’s commitments and projects in clinical & scientific research, advocacy and work on issues around respiratory healthcare.
This year Victor Gascón and myself tackled the agenda with gusto and energy. This is our responsibility to represent people who cannot always manage to attend such events and need our support to help them have a voice.
The Congress gives us the opportunity to share our concerns about the difficulties faced by people worldwide , our organizations current projects, our scope and resource capabilities. The focus and priority given to key issues on our agenda: awareness, quality of life, better access to care and pulmonary rehab, exercise, new treatments in the pipeline, better diagnosis and rare disease.
These topics don’t change much over time , especially as there are always less resources in healthcare budgets, we need to look for effective ways to streamline and work together using digital media but not forgetting there is an enormous population of people who do not use the internet to receive information.
Meeting with clinicians and researchers is motivational as the landscape of approaches to research include studies aimed at providing better support to patients in their own towns , improving their quality of life outcomes, activity levels and adherence, as well as cutting edge research in genetics from rare disease such as Alpha-1-Antitryspin. This year the ALTA award was made to Nerea Matamala, for her work under Beatriz Martinez at the Instituto de Salud Carlos III. (More info)
Beatriz Martinez Delgado
Unidad de Genética Molecular (51-00-033)
Area de Genética Humana. Instituto de Investigación en Enfermedades Raras (IIER)
Instituto de Salud Carlos III.
Smaller portable devices for oxygen use were being used by Karen O’Hara from the UK Alpha-1-Support Group and meeting with the Company Escalado, is useful to see how these kind of devices could help Spanish patients who want to live a more active lifestyle, get out and about and travel more easily. We met briefly with members of our advisory board to keep engaged in specific actions we have in the pipeline: Get more Active with Oxygen, the Digital Health Dynamic events in Seville and Barcelona to bring patients, care-givers and healthcare professionals together and see what is happening in Digital Health, show them what is around right now and learn more from experts in interactive sessions.
Our presentation of our m-health HappyAir clinical study at the ERS thanks to Jordí Vilaró, has enabled us to put down our roots with an initial integrated care support model including physical activity, which patients and healthcare professionals found very useful to help monitor + manage their daily lives. Adherence was very positive in our patient study group which helps patients keep empowered with our educator guiding them in their own care routine .
Discussions around this topic with clinicians, patient organization leaders generated a great deal of interest. We are already looking to the next phase where we can bring in an education program and more support on physical activity .Introducing pop-up events in peoples’ neighbourhoods for awareness, prevention and self-care. We had the opportunity to share ideas on how best we could work on improving this model with the help of our advisory board and other collaborators. Getting feedback from the patient leadership onsite. We thank all for their time and dedication to moving forward in respiratory care- to empower people to learn and develop their own self-care skills from their own homes.
World Lung Day
FIRS has proposed a World Lung Day of 25 September backed by the scientific societies across the globe. The patient organization community was formally asked to join in the movement to bring to the UN and the WHO the importance of lung health in our society and its current impact in our daily lives, life expectancy and work.
A charter has been launched at to encourage people across the world to sign and make our case.
As the third leading cause of death in the world and growing, this is probably one of the most important single tasks we as patient organizations, can work on together. As Dan Smyth stated, as past Chair of ELF. “patient organizations can move millions of people to act “.
Isabel Saraiva the new chair of ELF, has established her strategy for her coming tenure across 4 main areas of interest: inequality with regards to access to care and pulmonary rehabilitation, air quality and pollution as causes of respiratory diseases, rare disease , difficulties in diagnosis and access to treatment, and women’s role in lung health.
We are excited that we can also contribute and work together with the ELF , patient organization and scientific community to offer support for the ERS2019 to be held in Madrid.Thankyou to all those with whom we were fortunate to engage and we hope that the next year we will find the support needed to grow the Foundation’s scope and capabilities.