ERS 2017 offers the unique opportunity to network with so many people from patient organisations, physicians, medical societies and industry and get updated on each country's commitments and projects in clinical and scientific research, advocacy and work on issues related to respiratory health. .

This year, Victor Gascón and I tackled the agenda with enthusiasm and energy. This is our responsibility to represent people who cannot always 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 people face around the world, the current projects of our organizations, our reach and resource capabilities. The focus and priority given to key items on our agenda: awareness, quality of life, improved access to pulmonary care and rehabilitation, exercise, new treatments in development, better diagnosis, and rare diseases.

These issues don't change much over time, especially since there are always fewer resources in healthcare budgets, we need to look for effective ways to streamline and work together using digital media, but not forgetting that there is a huge population of people who don't use the internet. to receive information.

Meeting with clinicians and researchers is motivating, as the landscape of research approaches includes studies aimed at better supporting patients in their own cities, improving their quality of life outcomes, activity levels and adherence, as well as research cutting edge in rare disease genetics such as Alpha-1-Antitryspin. This year the ALTA prize was awarded to Nerea Matamala, for her work with Beatriz Martínez at the Carlos III Health Institute. (More information)

Beatriz Martinez Delgado
Molecular Genetics Unit (51-00-033)
Human Genetics Area. Institute for Research in Rare Diseases (IIER)
Carlos III Health Institute.

oxygen users

Karen O'Hara from the UK Alpha-1 Support Group was using smaller portable devices for oxygen use and meeting with the company Escalado is useful to see how these types of devices could help Spanish patients who want to live off a more active way. lifestyle, get out and travel easier. We briefly met with members of our advisory board to remain engaged on specific actions we have in the pipeline: Get more Active with Oxygen, the Digital Health Dynamic events in Seville and Barcelona to bring together patients, caregivers and healthcare professionals and see what What's happening in Digital Health, show them what's on right now and learn more from the experts in interactive sessions.

Clinical study

Our presentation of our clinical study m-health HappyAir at the ERS by Jordí Vilaró has allowed us to put down roots with an initial model of support for comprehensive care that includes physical activity, which patients and health professionals have found highly utility to help monitor + manage your daily life. Adherence was very positive in our study group of patients, helping patients to remain empowered with our educator guiding them in their own routine of care.

Discussions on this topic with physicians and patient organization leaders generated a great deal of interest. We are already looking towards the next phase where we can bring an education program and more support in physical activity. Introduce pop-up events in people's neighborhoods for awareness, prevention, and self-care. We had the opportunity to share ideas on how best to work to improve this model with the help of our advisory board and other partners. Get feedback from patient leadership on the site. We thank everyone for their time and dedication to advancing respiratory care, to empowering people to learn and develop their own self-care skills from their own homes.

world lung day

FIRS has proposed a World Lung Day on September 25 endorsed by scientific societies around the world. The patient organization community was formally asked to join the movement to bring to the UN and WHO the importance of lung health in our society and its current impact on our daily lives, life expectancy and work.

A letter has been released to encourage people around the world to sign up and plead our case.

As the world's third leading cause of death and growing, this is probably one of the most important individual tasks that we as patient organizations can work on together. As Dan Smyth said, as a former president of ELF. "Patient organizations can get millions of people to act."

ELF

Isabel Saraiva, the new president of ELF, has established her strategy for her next term in 4 main areas of interest: inequality in access to care and pulmonary rehabilitation, air quality and pollution as causes of respiratory diseases, rare diseases, difficulties in the diagnosis. and access to treatment and the role of women in lung health.

We are excited to be able to contribute and work together with the ELF, the patient organization and the scientific community to offer support to the ERS2019 that will be held in Madrid. Thank you to all those with whom we were lucky to collaborate and we hope that next year we will find the support needed to grow the Foundation's reach and capabilities.