Portal de Totana
www.portaldetotana.com
The president of the Spanish Federation for Rare Diseases (FEDER), Juan Carrion, said today at the Palace of San They were of Murcia, where the official ceremony of the World Day of these pathologies was held that a protocol hospital emergency would be necessary and professionals know the reference centers.
The event was attended by the Mayor of Totana, Juan José Canovas.
President of Murcia, Pedro Antonio Sánchez, recalled that twenty researchers working in the region in 50 lines of work related to these diseases and announced that the strategy of biomedical research will include an exclusive line to make this community a reference in the field taking advantage Community support lines also.
Murcia 4.4 percent of the population is diagnosed with rare diseases and since 2002 there is a pioneer with a section of medical genetics which serves about 3,000 people a year drive, since 80 percent of rare diseases are genetic origin.
At the ceremony were announced two cases, one of a child, whose mother, Maria Dolores Campos, who said today know the name of the disease that among other symptoms including dysphagia, cataplexy and hyperactivity, while Francisco queen recounted the case of her daughter Ainara, with a neurodegenerative disease "since 2014 left her in a vegetative state".
The son of Maria Dolores, Fernando, read a letter in which he asked "please do not skimp on protection and rehabilitation of life and even less when it comes to children. Do not just resources and research professionals."
This child requires the presence of a nurse in the primary school where he is, so from Feder has requested that all schools have a nurse who can serve children with rare diseases in what is known as "inclusive education "ie which seeks to address the learning needs of all children, with special emphasis on those who are vulnerable.
The father of Aimara claimed on behalf of Feder that helps to disability can arrive at the same time reaching the diagnosis that does not happen as in your case that your expenses totaled 30,000 euros and it was not until recently that was passed to him aid 268 euros per month three years after claiming he acreditasen grade 3 and largely dependent not only 2 who had approved it despite having 82% of disability.
The theme of the World Day is "Creating networks of hope" and, according to the president of Feder, these diseases "do not understand politics or football teams colors", but they do need such that health workers know the reference centers these diseases so they know the bypass route.
He recalled that Murcia was the first autonomy with an information system case (SIER) following an initiative emerged in Totana in 2008 and taken to the Regional Assembly, bringing 87,000 murcianos able to identify his illness, two thousand of the which they have already died.
also he puts his hope in a comprehensive care plan calling for since 2009 and stressed the specific actions included in the Regional Health Plan.
Finally, he claimed a rating system that lets longer be based on a standard 1999 that has become obsolete and taking into account the scale of the European classification system.
The regional president said that today is a day that should be replicated 365 days a year so that the voice of Feder "sound in our collective consciousness," and recalled that when he was sworn in the first group that received was this, with which he promised that their demands would be a priority of government, while acknowledging that ahead "is a daunting task"
Source: Ayuntamiento de Totana
Privacy policy
- Legal notice
- Cookies