CRE Enfermedades Raras (Creer)
Burgos
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People affected from rare diseases consist of a group of population with needed specific compensatory actions in service. About 7,000 of this kind of diseases have been identified. These diseases are usually serious, chronic, causing affected people the necessity of long-lasting and specialized attention or care.
Their number, due to a reduced prevalence, is poor for each disease analysed individually. However, as a whole, adding up all people with rare diseases and their families, they consist of an important group of Spanish population. Among the diversity of characteristics shown by the different diseases called rare or unusual, there is a common point, which is the necessity of promoting social and health care attention through the development of integral programmes aimed at single particular rare disease groups or a similar diseases group, giving priority over the attention to children and young people affected, specially to disabled ones, and their families.
These diseases create an extra problem since they are scattered communities. To guarantee equal access to social, schooling and health system and these citizens full share in them, reference plans must be adopted to improve the attention they are given to, encouraging concerned people work together and promoting research, information and making up specific mechanisms to raise their quality of life.
It’s essential to set up broad and national network, common platforms and strategies, coordinate plans with all concerned agents’ share and specially with the associating movement which must take a main role in the actions will be developed.
To sum up, there is complete necessity of stimulating equality of opportunity measures in order to guarantee the access and enjoyment of all those recognized rights people affected from more common diseases have and compensate them for the attention shortage they are given, guaranteeing equality, quality, security and efficiency in the given services. Cooperation and coordination among all concerned statements prove to be, from this point of view, a key working method.
The Law 39/2006, of 14th December, for Self-care Promotion and Attention to Disabled People, has created The System for Self-care and Attention to Disabling
(SAAD in Spanish) that raises, co-ordinately, centres and services, public and private, which follow common ideas and objectives. Coordination between social and health services will be, from this conception, a strategic working key in the Centre.
That’s why, the Minister of Health and Social Policy has made up and regulated the National Reference Centre for People with Rare Diseases and their Families (Creer) in Burgos by Order SAS 2007/2009
(186 Kb.pdf), of 20th July, with the strategic objective of getting better attention for people suffering from unusual diseases.
Its work in programmes and services will be developed looking for excellence, encouraging and promoting quality and it will be based on the rights of people with rare disease and their humanization.
