Why are there orfanni disease? What rare diseases registered in Ukraine? About 80% orfannyh disease occurs at the genetic level. The rest of developing cancer and ONCOHEMATOLOGICAL through illness, infection, autoimmune disease. European alliance of organizations of patients with rare diseases EURORDISnavodyt such sad statistics: two thirds of rare diseases appear as early as childhood. Thus 30% of patients surviving children all under 5 years old, the other in most cases are malformation of the entire life. Most orfannyh chronic diseases, treat them very difficult. Completely overcome such disease is almost impossible, therapy is aimed at reducing symptoms and adaptation to everyday life. In Ukraine There were many orfannyh disease, the most common of which are: Ehlers Danlos Syndrome-; Organic atsyduriyi; juvenile rheumatoid arthritis; mitohondriopatiya; congenital hypothyroidism; metabolic diseases; metabolism of methionine. Early diagnosis of diseases orfannyh To identify the risks of diseases orfannyh the first days of life in Ukraine newborn screening is carried out. Blood analysis is taken from the heel of the baby. The results diagnose diseases such as cystic fibrosis, phenylketonuria, hypothyroidism and adrenogenital syndrome. This early detection allows treatment to begin immediately, if necessary, which greatly increases the chances of the patient in a more or less normal lives. However, if we hold the state screening for detection of all 4 disease, the US is up 68 to diagnose diseases. State assistance in treating diseases orfannyh Treatment orfannyh disease is very expensive, and the drugs should be taken throughout life. So without government assistance the patient is necessary. Why so expensive orphan drug? The fact that most of them are based on high-cost biotechnology and to develop effective drugs should be more than a year of fruitful work and millions of dollars. The main problem lies in the fact that these costs are not paid off after starting the drug in manufacturing, because few patients, and the demand for drugs is relatively low. Therefore, without state subsidies to fight diseases orfannymy impossible. It is also very difficult to conduct clinical trials of new drugs for the same reason of insufficient number of patients. Patients suffering from rare diseases that require lifelong ensure appropriate high-cost drugs. Otherwise, the disease progresses and leads to death. Independently buy medicines they just can not, so the aid of government programs and public charities. In Ukraine, the MoH Order of October 27, 2014 approved the list of rare (orfannyh) diseases. There has been significant improvement in patients providing necessary medicines at public expense: orfannyh drugs for diseases included in the government procurement of drugs, their plans included in the National List of Essential Medicines. But this is only the beginning of a long path of care for rare diseases, which, unfortunately, every year it becomes more and more. The problem orfanni patients with disease that had them too. Because of this, they often do not notice how the state and charities. However, it is rare disease patients require daily financial and moral support, because their diseases are incurable and have a significant impact on livelihoods. Read more: Juvenile rheumatoid arthritis - is not a sentence: expert