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The deputy of the Popular Parliamentary Group in the regional assembly, Ana Maria Aquilino, has submitted a motion calling for the creation of separate records for rare diseases and low prevalence with which to determine the incidence of these diseases in the Region Murcia.
The MP is confident that this new record "facilitate the proper approach" because they are diseases that affect fewer than one in 2,000 people, and can be neurological, metabolic, autoimmune, etc.
He also claims that complaints about "they are a public health priority in the European Union."
Aquilino explained that "to be rare, patients with a rare syndrome face on many occasions, difficulties arising from the limited information available to health professionals themselves and society in general."
"Most of these diseases are very serious, threatening the lives of those affected.
Put in crisis the right to health and other fundamental rights of citizens and their families, and pose a serious psychosocial and economic burden for families "
Hence, the deputy of the regional government GPP suggests the creation of the Register of Rare Diseases, in a first step, let us know how it affects Murcia and be a starting point to give the correct answer to these groups of patients. "
Source: PP de Totana
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