CRE Enfermedades Raras (Creer)
Burgos
Information Sections
Frequently questions
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- What is an RD?
- Who can it affect to?
- When does it appear?
- What is the cause?
- How does it affect the patient?
- How does it affect the family?
- What can i do to help my sick relative?
- What is Creer?
- Who does Creer care for?
- What programmes does it offer?
- How can I apply for a place?
What is an RD?
A rare disease is that one that appears with low frequency among the population. When the word rare is used, it refers to the disease, not to the person who suffers from it.
The Rare Disease concept, also known as "unusual diseases", "minority diseases" or "low frequency diseases", are a group of diseases with several common characteristics:
- They appear in low frequency, defined by the European Union as less than 5 cases per 10.000 inhabitants in a group.
- They show many diagnostic and tracking difficulties
- In most cases they have unknown origin.
- They imply many social problems.
- There are a few epidemiologic data.
- They create difficulties in research due to the scarce number of cases.
- Most of them are lacking in effective treatment.
Under this name thousand of diseases are included, however individually they show very different characteristics. The main interest in grouping them is to achieve to join efforts to promote research and society interest in all of them as a whole (Siere).
Who can it affect to?
They can affect any people. They usually affect people of the same family and percentages can be nearly the following ones: 57% children, 12% young people, 31% adults.
When does it appear?
Although they can appear at any age, a high percentage of them do it during childhood. In fact, one out of three cases appears before the age of two.
What is the cause?
Disease can be transmitted by genes. In other cases, there isn’t family case history and the disease is the result of a genetic mutation or it can be hereditary, congenital or acquired.
How does it affect the patient?
They are usually disabling, chronic and degenerative. They can affect one or several body’s organs, causing physical, psychic or sensory disabling and with different affection degrees in the same RD. Moreover, there are also problems related to diagnosis and, of course, treatment. All this, sometimes implies social isolation.
How does it affect the family?
The knowledge that a family member is affected by an RD is going to imply a crisis.
The family has to reorganize its life. They must make a great effort to accept and cope with the new situation. They face great handicaps, such as lack of information, high attention and treatment cost, continuous journeys from their home place to be diagnosed, have the treatment,… Many times, due to the continuous support needed by the patient, they have to give up their jobs, even their social lives.
What can i do to help my sick relative?
Giving physical and psychic support without false expectations, motivating to activity and encouraging them to keep their capacities and face their disease. In addition to bringing them all our support and love, keeping in touch with associations and institutions which can supply all kind of information about their disease, treatment, care, technical support, economical supplies and in the most extreme cases being their eyes, their hands, their voice to get better quality of life.
What is Creer?
It’s a National Reference Centre for Social and Health Attention to People with Rare Diseases and their Families. It has been founded by the Ministry of Health and Social Policy with the strategic aim of getting better care for people affected from unusual diseases. It is run by Imserso and is placed in Burgos.
Who does Creer care for?
First of all, it is directed at people affected by a rare disease and their families. Secondly, it’s aimed at affected people associations and thirdly, at all those professionals or organizations interested in caring people affected from rare diseases and their families, such as foundations, No Governmental Organizations, health professionals, caring professionals, National and Local governments, governmental offices, research and teaching institutions…
What programmes does it offer?
The centre offers, among other ones, the following programmes:
- Samer programme: Rare Diseases Multifarious Caring Service, whose objective is paying attention to basic rehabilitation and psychosocial need of people affected from rare diseases and their families who live in Burgos.
- Intervention programmes for families and caring people (meetings, family rest, cooperation programmes with associations).
- Training and interchange programmes.
How can I apply for a place?
Filling in and sending the application form for admission in the programme you would like to take part in. Application form must be adjusted to the format given in this website.
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