calling for the commitment of the various Admins |
The town of Totana has joined the events organized by local "D'Genes" to commemorate the World Day for Rare Diseases, to be held tomorrow 28 February, with a concentration in which we have proceeded to reading of a manifesto, through which, has requested an urgent and immediate action can be accomplished only with an agreement between all the people who are part of this society.
The event was attended by the Mayor of Totana, José Martínez Andreo, members of the government team, City workers, members of the Association for Rare Diseases "D'Genes", friends, families and citizens who wanted to join this covenant, as concerned and caring people all suffering from a rare disease (ER).
Through this agreement framed under the slogan "For a covenant for all", as members have read "D'Genes" will be achieved figures cease to exist as chilling as those indicating that they currently handle rare diseases are responsible for 35 percent of deaths of children under one year and are the cause of 10 per cent of deaths of children between 1 and 5 years.
Therefore, it has applied for a Covenant of All to find a final political compromise that promotes a comprehensive strategy to allow true integration health, social, educational and employment, ensure equity, justice and solidarity they deserve all children, youth and adults affected by ER, and ensure equitable access on the diagnosis, treatment and rehabilitation, no matter how rare it is our disease, or where we live.
It has also been requested to support all Pact, among other things, to 3 million people affected by ER in Spain, all families struggling in the invisibility, isolation and pain, and they see all too often, forget their right to health and other fundamental rights, by the rarity of this disease, all persons who, without a diagnosis or suspicion of it, are living in despair, fear and anguish which is a disease well.
While reading the manifesto, had appealed to the Government of Spain and the regional administrations to commit themselves to promoting the creation of the State Organization for Rare Disorders and the body to coordinate the National Strategy for ER and all proceedings relating to such conditions, the implementation of the Plan of Action for the ER, to ensure equitable universal access to high quality health care in a fair and sympathetic to all the sick and promote as a priority, reference centers the ER, among other issues.
Finally, they asked the national and regional authorities, medical societies, the scientific, professional, industry, organizations, media and civil society that also adhere to this covenant in this Day, as well as other days 'global' living individual who suffers a rare disease.
