Madrid, 1 mar ( EFE).- Lucas, a “Crystal children” that tomorrow meets four years, and his brother Anton, have been the protagonists indisputable from the official Act of celebration of the World day for Rare diseases, today to refer to Doña Letizia Ortiz to tell him: “Princess, have hope”.
The playful attitude of Lucas, in the arms of his mother on the desk, from which spoke on behalf of the more than three million people in Spain have a condition very rare – there are more than 7,000, although only about 1,000 were diagnosed-, has not left indifferent to those attending the event, which has been chaired by the Princess of Asturias.
Commemoration of the world day, which this year has had place at the headquarters of the General Council of the judiciary, has counted with the presence of the Chairman of this body, Carlos VÃvar; the Minister of health, social services and equality, Ana Mato; and the President of the Spanish Federation for rare diseases (Feder), Isabel Calvo, among others.
Blanca MarÃa Gutiérrez, the mother of Lucas and the bones Spain glass Association President, told how her son, who “was not going to birth, struggled to live”, and how, despite the fact that only given a life expectancy of two years, tomorrow celebrates its fourth birthday.
The disease osteogenesis imperfecta, better known as “Crystal bones”, is characterized by a deficiency in the production of collagen I, causing an excessive fragility in bones.
“Here we are, as one of the cases of daily improvement”, highlighted white, who has been accompanied on the podium by her husband and another son.
Two children have risen on applause from the audience, when after the intervention of his mother, they have approached the Princess holding two yellow cards, with the legend: “Princess” and “We have hope”, at the same time that chanted in unison the message.
Letizia Ortiz has pointed out that a couple of weeks ago he met with representatives of ERDF, who told him of their problems, such as difficulties of diagnosis, which is an average of five years, and broadcast you that “these times of crisis”, “made them be the weakest among the weak”.
A meeting in which he learned, as it has secured, that “is possible to live with the disease and not just suffering from”.
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Recognizing that,”albeit very slowly, they are taking steps in the right direction”, the Princess has advocated compromise and help”, both from Governments and from the private sector, through the promotion of research and quality care, and has also requested the support of the media.
For his part, the Minister of health has pointed out that these diseases are also known as “orphan”, since “it is uneconomic, private, investigate the causes of its appearance and commercialize drug treatments that could mitigate their effects perspective”.
Mato has ensured that this year the Government will continue funding practices in autonomous communities in relation to these diseases and has announced the creation of a website where “show and share” these diseases to facilitate better understanding of them by health professionals.
The President of ERDF has recognized the path, but has warned that “much remains to do”, while the President of the CGPJ has regretted oblivion who suffer from rare diseases “within a society as vertiginous and materialized as ours”.
During the ceremony, the Princess of Asturias has made delivery of the ERDF Awards, which this year have awarded, among others, to the Committee Spanish of representatives of people with disabilities (CERMI), for their promotion and defence of the rights; the day group (Corporate Social responsibility); and Francesc Palau, scientific director of the Center for biomedical research in network for rare diseases (CIBERER), for their investigative work.
