Ljubljana – Today, on European day of rational illnesses, today's profession will be held in the 5th National Congress, together with the representative of the European Commission. Alexandra Binder is becoming an international. Today, a new European platform for rare diseases registries has begun, with 30 million people in Europe, 10 times in the world and 150,000 in Slovenia.
Despite an important progression, 24 outbreaks of 24 European reference networks in 24 hospitals, including 24 disease groups, require rare diseases for systemic improvements. 95% of these diseases still do not have adequate medication, and there are no appropriate medical and medical treatments and therapies. Heart-Letters, February Charity Fund William Julian, "heart" is the only option to show that the company does not want small fighters, everyone else is a child and three-fifths do not wait for a fifth birthday – and their families. They face up front and "normal" out of society. This year's password is bounded on the day of rare diseases: patients should show their "rare" and "common" symptoms to show their concerns. Finding the best specialist for the poorest is also the European Commissioner for Vytenis Andriukaitis for Health and Food Safety in Europe.
This year, Rare Diseases offers the opportunity to reconcile human beings with the logo of the campaign day, which focuses on overcoming global problems associated with patients with rare diseases and their relatives.
Philip, Charles and Lorraine with 30 million Europeans and 350 million Earthlings with strange illnesses. The first comes from Romania, comes from Croatia, Lorena comes from Spain. Their stories are based on this year's campaign, on February 28, the day of rare diseases. 150,000 people in our country found orphaned diseases. It's just one of twelve Hemophilic Frames.
AFP Hemophilic frame: if not allowed in football, it plays badminton. (pictured symbolic) AFP PHOTO / Johannes EISELE Photo: Johannes Eisele Afp
Hundred hundred-year-old Romanian boyfriend Philip has a chondroplasty, a type 1 neurofibromatosis, and Lorena Phelan-McDermid syndrome. Or ease of understanding: stopping growth, those that suffer from progressive and peripheral central nervous system systems and rare genetic disorders that cause partial erosion of the 22q chromosome. The fate of the brand is slow in the blood. Hemophilia, vascular diseases and a few rare diseases (such as hyosomatotropism (growth hormone deficiency), mastocytosis (dermatological disease) and Huntington's heart, a non-controlled neurological disease, will be offered today by the National Fifth Cancer Congress. Jože Faganel The president of the Association of Rare Diseases, "a brilliant medicine," revealed itself in the congress, will also be presenting an important progression in the screening project for newborn children in Slovenia, which last year was waiting for two illnesses, which have now been screened by fourteen additional metabolic diseases.
The diagnosis of Hemophilia-A reminds Mark's mother (the name is fictional), he did not have a boy at the age of four. Hemophilia occurs with a 10,000 boy born, there are about five hundred people in Slovenia. While haemophilus, despite being a grandfather, Mark and her mother carrier, haemophilia news was a shock. Mamica tells: "He jumped on the marvelous trampoline, kneeled and gathered water with him, he got back for a long time and returned the doctor's instructions for two weeks, but we did not give peace. We looked at his eyes at home and saw the bleeding … "Two weeks ago, Marcus would probably be serious … He now learned from haemophilia. It does not play like football or basketball kicks, but practice badminton. Or, as he says, "Badminton is my second sport, the first is the flexing …" Second, he added: "… on the keyboard." Mama adds: "In kindergarten, my mum often saw me, because we did not climb But our child does not like the others: it's about giving a patch on the wound and organizing things. If you have bleeding you need a blood factor in eight factors, it's not always in hospitals … That's because it's so expensive, "says Mom . Jože Faganel, in the most severe forms of haemophilia, is the worst of haemophilia A, which means that it is reliable to have a factor that maintains itself or their parents when a person is at risk of being in a hospital. Rare drugs treatment costs cost more than 100,000 patients a year. There are 196 rare cancers among rare diseases. In Europe there are four million people living.
Jože Faganel, President of the Association for Rare Diseases, also has one hemophilia.
The list of rare diseases has a total of 7000 cases, with 350 million people ill.
150,000 people in Slovenia found rare diseases.
Last year, children made significant progress: they gave twenty diseases.
In 80 percent of cases, rare diseases, between 6,000 and 7,000, have genetic origin, 75% of cases affect children and are often incurable. Rare illness is usually divided into ten people – more than 90% of the disease – there is no medicine; If 110 years ago they were registered in Europe, the costs were involved in regular healthcare controls. The treasure trove of rare diseases of Slovenia spends about 36 million euros annually, that is, seven of all medications.
(Mark's mother story)
While healthcare professionals are in contact with their ears and hearing, given the serious consequences, carefully following the guidelines, the company often has no friendship and understanding, says Marken's mother, who recalls twelve-year-old experiences of her son. life.
Hemophilic etiquette was premature, and Marco, as a young child, scratched his face and faced his face to accept his classmates. Thus, he protested from the people, according to which, according to the mother, lack of ignorance and empathy, the problem of society is growing.
Then, admitted or at least a pity of compassion, Marco became a childhood childhood "This broken baby", parents become excessive, nobody leaves their birthday inviting, because it can be injured in the party, and then "parody", their members can not escape from anybody. And here they faced the situation that showed the firmness of society. Mom colleagues have complained that they take precautionary measures to take advantage of the disease, that is, it is not done with other children … "Illness" is honestly choosing a "victim" …
Due to haemophilia, the boy must receive a drug from certain injuries – the concentration of the blood clotting factor that prevents internal bleeding. "In front of the falls to Croatia and other injuries, Marko Ljubljana was a" guest "in the pediatric clinic clinic, while other parents were patching the bugs and bleeding knees, we were more stressful, especially when the needles did not receive regular meals and treatment He repeatedly cried aloud, protested and asked what he needed, "recalls Marken's mother.
And to save him as much as possible, be careful. Surrounded by many restrictions, Markus's rejection of the other children was felt and they felt very bad. However, despite caution, injuries occurred: falls and accidents went a lot to go to white hollows, with sighs, eye contact and moderation of parents, because they were "horrified".
Currently, Marko is a teenager who lives with hemophilia and can not seriously end up with soccer or basketball, but there is no limit to the disease. Some serious injuries survived, so he just knows that he should be a guy, regardless, especially because his knees still heal his needles. It's painful for an ungrateful tag that disappears for years, but it's still bitter touch, Mark's mother ends.
"I hope you'll be bled" The classmate continues to scream and laughter. Our boyfriend is sad about this, Mrs. Marke asks her. He comforted his son's words, when he realized that he was accustomed to wearing a fellow's skin, he could easily say words once difficult: "Our boy grows, his skin is getting worse, the world and people look deeper …"