Ljubljana – Today, on the European Day of New Illnesses, the post will meet today at the fifth national conference, with the representative of a representative from the bad European Commission. Alexandra Binder is a growing international. Today, a new European platform for rare disease recordings begins to work, with 30 million people. suffering in Europe, 10 times in the world, and 150,000 in Slovenia.
Despite great progress, a & # 39; including 24 European information networks based in 313 hospitals with 24 diseases, rare diseases require systematic improvements. Because 95 percent of these diseases still have no medication yet, and there is no appropriate provision for medical care and medicine and medicine. Heart letters, written in February by William Julian's charitable property, are just one of the "heart" opportunities when he can. The company has shown that it is not in the care of small activists – everyone else is a child and three out of ten are not waiting for the fifth birthday day – and their families. They fight today with a prejudice and a & # 39; bringing people out of the "ordinary" society. This year's password is for a day of rare diseases in total: those who suffer to be able to go to; show the "poor" and "normal" to express their concern. To find the best specialist for the poorest, it is also a requirement for the European Commissioner for Health and Food Safety Vytenis Andriukaitis.
This year's Moving Disease Day offers an opportunity to connect humanity to a campaign logo that will, attracting attention to overcoming global problems that are infected; accompany patients with rare diseases and their relatives in a range of health and social care policies or services.
Philip, Charles and Lorraine are only three of the 30 million Europeans and 350 million rare landquarters. The first is a & # 39; From Romania, the other from Croatia, is Lorena from Spain. Their stories are based on this year's campaign on February 28, a day of rare diseases. In our country, oxygen diseases were found in 150,000 residents. Hemophilic Marko is only twelve years old.
AFP Hemofilic Marko: If he is not able to hit football, he plays badminton. (there is a symbolic image) AFP PHOTO / Johannes EISELE Photograph by Johannes Eisele Afp
Eighteen-year Romanian brooch Filip has acondroplasia, Karlo type 1 neurofibromatosis, and Lorena stay with Sylan-McDermid syndrome. No, to be easy to understand: they suffer from a quiet growth, disagreement of a more remote and remote nuclear system, and rare generation of genetic disorders; including a 22q chromosome decline. The result of a slow slow hauling Marc. Hemophilia, known as "vascular" diseases, and some of the rare diseases that are less commonly known as disease (deficiency of hormone growth), mastocytosis (dermatological disease) and Huntore chorea, unusual disease of motions Non-ruler, a fifth National Conference of severe diseases in Brdo-West Post According to Jože Faganel, president of the Association of New Illnesses, the latter is a "high healing". It was featured at the conference. It also demonstrates important progress in a range of screen exams in Slovenia. Last year the screening for two diseases has become, now the screen is expanded by seven metabolic diseases today.
It is to diagnose a hemophilia-A, a & # 39; Memories of Mark's mother (the brilliant name), he did not put the boy at four. Hemophilia occurs with one boy in 10,000 born, in Slovenia there are about five hundred people. Although Hemofilic is also Marc's grandfather and his mother was a bearer, the news about hemophilia was a disgrace. Mamica said: "Leum Marko on the trampoline, hit his knee, and then started collecting water. He got a long time, and the doctor returned in two weeks to review orders But we did not have something peace for us. We looked at life-long in the home and saw bleeding … "Two weeks ago, Marcus might have died dead … Now he has learned to live with hemophilia. He does not hit football or basketball as their peers, but use badminton. No, as he said, "Badminton is my second sport. The first one is to stimulate your fingers …" After a second one, she added: " . "Mama says:" In the nursery class, other mums would usually be seen as we did not let us climb. But our child does not Similar to the others: to attack the injured and the thing would be resolved. If it's complicated, it must be an eight-year-old fact that is not always available in hospitals … it's so expensive, "said Mum. Jože Faganel, the most difficult method of hemophilia, is living in the worst form of hemophilia A, which says that it is more reliable to be a factor alone or to be kept with his parents , as at the moment it is at risk of being in hospital. Medicines for rare disease treatment cost more than 100,000 patients per annum. Amongst rare diseases, there are 196 rare cancer. In Europe, there are four million people who survived one of them.
One of them is Jože Faganel, president of rare diseases also: hemophilia A.
There are 7000 tools listed in rare diseases, 350 million people are ill.
In China, a rare disease was found in 150,000 people.
Last year, great progress has been made in babies: they have already been investigated for twenty illnesses.
In 80 per cent of cases, rare diseases, which are expected to be between 6000 and 7,000, are genetic origin, in 75 per cent of cases that occur; affect children and are often unlikely. There is rare disease found in one out of ten, for most cases – according to some data in more than 90 per cent of the disease – there is no cure; if they were once again registered in Europe 110 years ago, their costs are usually very much involved in health surveys. Slòiviain's financial remedies for rare diseases cost every year about 36 million euros, which is seven percent of the cost for all medications.
(the story of Mark's mother)
Although health professionals can talk to the essays that are just ears and ears, aware of the effects that are dead, keep the instructions carefully, often do not. Friendly company and understanding, Mark's mother, who remembers the bad adverse knowledge of the twelve years of his son's life.
Hemophillia became an early label, which Marco, as a child, would better scratch out the skin and break it into the cell; piece, to make sense that it is & # 39; assume peers. So, he made a protest from the people, which, according to his mother, is due to ignorance and lack of compassion, which is also a growing problem of society.
Instead of accepting at least some sympathy, or at least Marko came to his early age "The damaged baby", which parents really transform in wad, a boy who does not have a person; inviting a birthday because he can be injured at his / her; party, and later and the "snicker" that their peers "swallow" can not do because they are able to bleed. And here, there was a situation that shows how strong the society is. Mama school companies respond to their complaint; Pre-use the steps in advance to take advantage of the disease, which is not fair for other children … As if the "disease" was honest when choosing a "victim" …
Because of hemophilia, the boy needs a drug with special wounds – the density of the fracture that flashes the blood. left to be & # 39; grind into its inside. "Against easas and other wounds that were not very small in the time they were growing up, Marko was often" entertained "by the Ljubljana dotiatra clinic clinic division. to blow cold and to blow the knees of blood, we've been spending more weight. Especially an otter that never used the nappies and to do it; get the cure, who repeatedly shouted again, complained and asked what he would have all, "and" remembers Mark 's mother.
And for saving as much as possible, they were very careful. Circulated by a number of limitations, Marko felt different and very bad from the unlawful difficulties that other children could do. However, despite the crisis, the injuries had occurred – many casualties and accidents followed by rush to the white appliances, along with sighs, eye contact and parental assessment that "a & # 39 ; worried "because of" wounds like that. "
Today, Marko is a teenager, has been learning to live with hemophilia, and as well as being able to seriously tackle football or basketball, the disease is not more more than restricted. He survived well, so he knows he needs to be careful, whatever he does, in particular, because his knees are still in his position; keep the threads out. The still outstanding thing of the unobtrusive lion who has been declining years, but still remains; keeping bitter, ending Mark's mother.
"I hope you'll bled," her class is & # 39; cleansing him and laughing heavily. Our beloved is sorry about this, asking Mark's mother. It was the biggest word; given to his son's words that she was very familiar with using a skin's skin when he realized it so sadly; The words were, and said so easy: "Our boy is growing up, his skin grows deeper, the world and people look deeper. . "