On the eve of World Rare Disease Day, we received sad news at Lovexair: the loss of our colleague Consuelo Pérez, a member of our patient advisory group. Chelo suffered from Alpha-1, as did Arran, my son.

I met Consuelo when she got her diagnosis, at that time I was President of the Alfa-1 Association in Spain, where she was a member.

He later joined the Lovexair Foundation due to our common interest in supporting oxygen therapy patients due to isolation, oxygen dependency and lack of active living.

Their work and involvement has inspired everyone and has led us to launch the #PionerosHappyAir project.

Thank you Chelo, for always having a smile, for your sense of humor, for your poise, your wisdom and understanding and for joining us in everything you could. We will always have you present. To his family, on behalf of the entire team, we want to send a warm hug at this time.

As Arran's mother, and on behalf of both of us, we pledge to continue advancing this cause. He as a HappyAir Ambassador bringing our message closer with the style of the new generations, to continue raising awareness about the importance of caring for lung health in young people and maintaining a healthy lifestyle and me at the Lovexair Foundation.

The involvement of those affected, like Chelo, is not only exemplary but essential to achieve the mission that we have as an NGO, which is to defend the rights of people with respiratory diseases to receive the support, accompaniment and comprehensive care that are needed.

In 2020, we will continue to defend the right to breathe clean air and a decent life for those with rare and respiratory diseases.

A hug to her family and all the people who knew her,

Shane Fitch