Welcome to the Official page of the Presidency of the Portuguese Republic

This is a very pleasant day.

Many of those here had already dreamed of it a long while ago.

This is a beautiful story that is enjoyable to tell.

As far as I’m concerned I was caught up in it almost as soon as it began.

Marco had left a short while ago and Paula was very sad, but was already full of plans.

All of you here today should know that this is a tale of love between a mother – Paula – and a son – Marco – that will now reach out to many more mothers and many more children.

It was through a magazine that, in April 2006, I became aware of this story that deeply touched me and made me feel that after all the world is a better place than that which is being heralded about.

I wanted to meet Paula and am glad it happened, since it is always enriching to meet people like Paula. And in that precise moment I became the soulful godmother of the project that was already fully in Paula’s heart and started to grow roots in me. I wanted to provide visibility to the dream of building the “Casa dos Marcos” and to associate myself to this idea that, in addition to its beauty, I felt as very necessary and pioneering in the difficult and complex world of Rare Diseases.

In this first meeting Paula already knew so well what she wanted doing that I thought that in her mind “Casa dos Marcos” was already furnished. Such is the strength of belief!

What called my attention further in this case of love without barriers was the unlimited, total trust that Marco had in his mother.

- Mother, if there isn’t a school for me already, build one yourself!

Here, today, we know that Marco had his reasons.

When he left, Paula, who had a rare son, decided to dedicate her life to other very rare children. And if Marco had a total belief in his Mother, today there are many of us, happily, who also believe.

Today we are laying the corner stone of a dream she started to have on her own, but which she had the ability, the courage and the capability to reshape into a collective dream that involves all of us who are here today and even those who aren’t.

She was able to draw alongside, in addition to many people of good will, highly qualified scientists and technicians who knew very well what they were getting into.

As such we had the great joy to publicly present, in 2008, the Scientific Committee of “Raríssimas”, which comprises twenty two well known scientists from several areas.

We had the joy to launch this year, on 9 February, European Day of Rare Diseases, a very important book for all those who in their lives are faced with the need to attend directly to family members or friends that suffer from one of these pathologies. Rare Diseases from A to Z.

On that same day, the Observational Study for the Preparation of a Record of Patients with Rare Pathologies was presented. All of those involved in this project know that these are key steps for those that suffer from rare or vary rare diseases.

This dream comprises the society which we already are, but is directed towards a society that we all want and have the duty to be: a fairer society, better capable to answer the grievous issues of its weaker members.

The “Casa dos Marcos” will answer one of the greater concerns of those that deal with our citizens who are different.

The greatest anguish I have witnessed in all the families who have in their care people with pathologies that are more or less incapacitating is precisely that “cri de Coeur”: how will I be able to get some rest? Who is going to mind my dear one when I disappear?

How can we adequately care for them, make them happy, comply with our affective and social responsibility towards them?

The work is far from finished, but this moment is such a strong indication that we will achieve our objective that we have the right to celebrate.

Let us thus celebrate, and believe that we are on the right path in order to very shortly get together again at the opening of “Casa dos Marcos”.