Mrs Maria Cavaco Silva Speeches
In Portugal we have approximately 300 people suffering from cystic fibrosis.
The work carried out by the Portuguese Cystic Fibrosis Association has been a priceless aid for those who are facing this devastating rare disease, which represents an enormous weight not just for the sick but also for all those who provide them with support – family, friends, physicians and all their caretakers.
No cure is until now available for this disease, but the great scientific advances in the genetics area bring us hope for the future. There was much that was irreparable before and that is now treated successfully – we must never forget the reality of the great scientific conquests achieved in the last decades.
While the cure is not found, the role and work of all countries’ associations is to join forces and skills to achieve whatever may be within their possibilities. Provide information, exchange experiences, and establish support networks – now made so easy through the Internet – for all that suffer from this pathology that is so debilitating and limitative of a life in fullness.
My presence in the opening of the 36th European Conference on Cystic Fibrosis is the evidence of my appreciation for the work that has been developed to assuage the difficulties – which are numerous! – of those who live with this disease.
While the research proceeds and provides us with reasons for hope but no solutions are yet available, what has to be done is to try the advanced diagnosis, in order that possible treatments are started in time to avoid greater irreversible damages. And this has been achieved. Numbers show us that life expectancy of the sick has grown much in the last few years. If in the 50s of last century that expectancy numbered ten years, today, with the advantages we have achieved in symptoms control, this period can already be in excess of 30 years.
In Portugal we have an incidence of 1/6000 cases in newborn per year and their being transferred, as swiftly as the diagnosis is possible, to specialist centres in cystic fibrosis has shown encouraging results.
We have a team from the Faculty of Sciences of Lisbon University, headed by Margarida Amaral, who discovered a gene that may operate as a therapeutic target against the disease. Another team member, Carlos Farinha, even received the 2012 Romain Pauwels Prize for his work from the Human Respiratory Society.
These signs bring light into the future and in spite of the many difficulties we are living in current times, I place my trust in your willingness to continue your work with drive and great hope that, sooner or later, the cure will emerge.
I hope that this Conference will bring some advances in the course that has been followed in the past decades. Always with the objective to provide all those who are involved in cystic fibrosis a better quality of life and a reinforced trust in the scientific advances that we all so closely follow.
I wish a good afternoon and very successful work.