Fundación ONCE is “Vaccine against indifference” in support of people with rare diseases.

Madrid, February 2012. Foundation eleven adheres to the campaign you get vaccinated against indifference ” in support of people with rare diseases. Foundation eleven joins the campaign for the world day of disease rare which organizes the Spanish Federation for rare diseases and transmits his public support to the more than 3 million Spaniards with rare diseases.

From Fundación ONCE encouraged to everyone is vaccinated against the disease of ’ can do anything ’, disorder of ‘ while I do not touch me ’ or syndrome of ‘ I I would not illusions ’. To do this, so just have to visit www.enfermedades-raras.org and put our grain of sand ”, explains Miguel Angel Cabra de Luna, director of social and international relations and strategic plans of Fundación ONCE.

With this appeal, since the founding eleven join this world cry ” and thus claim the fundamental rights of the people with rare diseases. In particular, from Fundación ONCE claiming that rare diseases are a priority social and health. Society does not have to look the other way. All United must act and help these families to show them that they are not alone ”, says Miguel Angel Cabra de Luna.

February 29. World of rare diseases day

this accession is carried out within the framework of the day world of rare diseases this year will be held around the world on February 29. In this way, ERDF in collaboration with the European Organization for rare diseases (EURORDIS) organizes an awareness campaign this year has as its central motto you get vaccinated against indifference ”.

Specifically, from ERDF and within the framework of the world day become a question do know the disease while I do not I touch or disorder of can do nothing? They are diseases of the indifference we immobilise the problem of rare diseases ”, explained from ERDF.

From the Organization and through the awareness campaign they want to convey that these pathologies are not rare, since everyone suffers them at some point in his life, leading to apathy or despair. For this reason, and to stop this epidemic of indifference ” from ERDF have launched a vaccination campaign ” through its website www.enfermedades-raras.org.

As a result, people who are vaccinated not only will no longer be indifferent to the problem, but it will also help families and individuals with pathologies rare access to projects such as psychological care, social care, Conference of family respite, family meetings, training or networking of patients actions.

The objective is to reach the 3 million people vaccinated, the same figure that persons with pathologies little frequent there are in Spain.

What are going to do?

To achieve this awareness and this mass vaccination on the problem, during the month of February will boost a hundred of activities by the world day for rare diseases. These activities will be organized by ERDF and their more than 200 associations in collaboration with institutions, companies, administration, social platforms, researchers and medical societies.

The goal is to position to rare diseases as a priority social and health. The reason is that the lack of information and lack of social awareness of these diseases leads to situations such as the middle of diagnosis for these pathologies are 5 years or 76% of people with these diseases feels rejected and discriminated against. And it is that the seriousness of the problem is such that data ensure that 35 per cent of deaths of children and infant girls are due to these diseases.