The Renewable Disease Network, set up by 9 Transient Disease Societies, was set up to cure patients' voices and relatives with rare diseases, to highlight their problems and solutions be achieved.
Continuous, continuous, metabolic, genetic, and some of these diseases are fatal, and 350 million in the world and in Turkey, which affect 6 million people.
On February 28, Earth Terrestrial Disease was present, representatives from 9 Non-Disease Associations and patients suffering from these diseases combined and held a news conference. The common message is: "Although the diseases are rare, the results are really bad for both the person, the family and their community."
9 RARE RARE DRIVING WORKBOARD
Albinism Society The Board Member Alim Yilmaz, the purpose of the Network of Intelligent Networks is to provide solutions to health authorities as an interested party to establish the basis of the legal regulations, to increase increased treatment opportunities and to provide benefits to the new review, he said.
"For this reason, all of us should have the same goal, the quality of life and the quality of individuals with rare diseases to society," he said.
Cystic Fibrosis Support and Dying Society Deputy Head of Serap Çöremen stressed that early diagnosis is very important in rare diseases and has shown that the scrutiny of the revised shade blood is crucial.
Alperen Kasikci, a cyclist fibsticis euslainteach drew attention to the importance of early criticism with his own life story. Spoonbilder, a cystic fibrosis patient in one in 3000, said their life was 30-40 years, the town was traveling around it; but not confirmed, finally it was confirmed that a 6-year heat test was confirmed by the illness, but the six-year loss has been a long time, he said.
Spoonman said, "Indeed, I think I was very lucky sometimes. But on the one hand for 13 months to get into the control of lung remodeling and to follow under the early diagnosis What I asked in my life, we will think about what my life will change. New methods for drug and drug treatment taken out in the treatment of rare disease centers and the state to build this case and develop policies, "he said.
PARTIES WITH AN EXPERIENCE FOOD
Family Association PKU Fenilketonuri President Deniz Yilmaz Atakay said 200 children were treated as PKU patients (phenylketonuria) every year and drew attention to the problems created by PKU that is the disease in newly-reviewed screening.
Atakay stressed that patients with PKU should be able to take a lifetime of low protein for life in early diagnosis. Even if the disease is tested early, PKU patients are mentally criticized if their medications and special protein foods are not low enough.
Atakay, yakın said About 20,000 children and adults living in Turkey have a special diet of low protein. Unfortunately, these people are not healthy at present, but many of them are mentally criticized, as unfortunately they can not reach certain expensive food. Early judgment is very important but if the person who has been proven can not be treated and special nutrition, early diagnosis can be done; Losing the importance of these rare animals has been lost without being an active part of the society, "he said.
"I have problems in my life, but the hardest days I will be back to the day"
LH MPS Group Muteber Eroğlu, Chairman of the Board of Directors, said: "We value the efforts of the Ministry of Health, SSI and centers of rare diseases and patients.
Faruk Eroglu, type 2 MPS patients said that the method of trying to reach the test and handle was very difficult and his / her; affecting him and his family, saying, "We have been very ill, diagnosis and treatment are not so difficult for those years, but much remains to be done. If there was a rare disease, somewhere and not to get out. I could continue with my education.
Eroglu, "I have problems in my life, but the most difficult days behind me," Kasikci said, "I can continue, I have a heavy cure and meet the state. ; I can continue with my school from outside, importantly, always helping me, my family have a family, "he said.
"I do not explain my laws"
Society is my passion President Emre Erdal, born in 2017, was born by Treacher Collins, his daughter, giving information about the disease.
Treacher Collins Syndrome can be seen in 50,000. This disease, which is marked by the fact that the human eyeballs are not improved, have a small chin which has not been completely made, that is, genetic syndrome who is follow the difference in appearance.
Erdal was stressing her & # 39; The idea is that the aim is to impart her beautiful beauty and people are working on how it is, and that their goal is to be at the same time; remind people that people with disorders face as part of society to change their understanding.
Treacher Collins Syndrome, Zeynep Cakir, lawyer, said, "I have 50,000 of Treacher Collins Syndrome. Because I've been getting a scarce syndrome without my eyelids and the h-eyelids. For this I had seven times of work. But this did not block my education and I had a job I had never had any problem with myself, I have more difficulty with society, rather than their understanding of beauty in society is very high, I have been open to a long-term perspective and unnecessary questions because there is no beauty in me. She asked me if I was tired and tired to walk after I looked forward, and so I did not accept it because I had been peace on my own for 26 years and lacking syndrome means that I should be sent out of society and society. It should not be for individuals to be excluded in the community. So I went to the network. I was not aware of how often it was to & # 39; Going to the network, but after I came together I realized that I was very rare because I'm seeing a syndrome in 50,000, "he said.
Çakır said: "A facial biodiversity in society that creates a perception of one to face directly, unfortunately, individuals who the opposition is inconsistent, whether they are in social or public life.
"MY HAS MAKES A Naughty
NCL Neuronal Ceroid Lipofuscinosis Disease Fight and Solidarity Association Mine Keskin Ergin, who is chair of a range of oily drugs for a long time and is very expensive because the number of companies that work on this case is very small, saying that more companies work in this area, drugs can have affordable and long-term prices that will add to the health economy and our long-term country he said.
Ergin, a patient is ordered and agreed by the Ministry of Health, awaiting the results of commissions from the commissions, speech, healing and other activities lost by saying, "The life and quality of children really valuable and we should not compare the price of the drug, "he said.
Ramazan Çaylı, a relative of patients, reported that his son and daughter had been found by NCL type 2, "My son lost the chance to take the item because of I was delighted with the bed, and my daughter still has a chance. My daughter is not currently covered by the Health Ministry to meet the criteria for medication, but Six months after the drug can not be walking when you can not get the drug.
1 HELD ON AN MILLON PERSON ONLY 7
Cystinosis Patient Society Gülnur Gökmen, Convener and Small Patient Gel Unfortunately, unwanted organisms fail to evolve as a result of late diagnosis and loss of time in some of the rare diseases. We have 32 thousand people in our country waiting for an organ donation. According to information by March 2018, 392 people made donations. An individual can save a life by sending each group. 50 people can hope with the same eyes and donations of wine. Unfortunately, only 7 out of a million people in our country are organ donors. Organism from living organisms is a real problem, but after an organ donation. Many patients die in corruption repossession. To address this problem, the world is turning to & # 39; Belgian Model & In a Belgian English, if the person is confirming that not sending its members, the organs can not be taken. After the death of each person's person who does not say that his organs are transmitted to patients.
100-200 METERS HIKING MARATONA EQUIVALENT
Crusader and Scleroderma Disease Society Chairman and patient of their headquarters said; Kamil Hamidullah's bonebirth lost his brother because of this disease. You should understand how we are deadly. The child's mother's illness is so urgent, the brother can not understand his brother. As you walk 3-5 degrees or walk 100-200 meters, you walk out of the breath so that you can. running a marathon. Yes, indeed, we'll run to & # 39; marathon while he breathes, "he said.
SMA Disaster Association Vice President Ece Soyer Demir said, "We have difficulties in accessing social rights. Having learned that my son has a SMA patient, we came with their families and SMA-DER based. people who can not meet their needs are responsible for the bed and who can not carry out some of their daily life activities or everything that should be done independently during the day.
These patients can not benefit from the physical treatment services they should receive from home health centers. In the context of home health services, the cure can not be deduced or restricted due to reasons such as staff and unobtrusive carriage. Special education should be given to pre-school, primary, secondary and secondary school pupils who have shown that they can only benefit from formal education centers due to health problems. According to its concept of & # 39; a reasonable governing body set out in Article 2 of the UN Convention on Rights of Persons with Disabilities; For disabled people, positive discrimination is essential to make the exam and education environment fit, "he said.
EP AWARDS THE OPEN OF THE OWNERSHIP'S OPTIONS "
Albinism Society Hakan Çalışkan, a member of the Board of Directors, said that education and employment are among the areas where people with rare diseases can face the biggest problems, and that the education system is generally organized but that it should be stretched to meet the needs of rare people.
Follow Caliskan his words as follows: "My problem was trying to write notes and not learn effectively and go through the board at the beginning of age primary school, especially in primary school age. The National Education Ministry has not yet investigated this issue, so it is important for the child to tell the teacher to & # 39; maintain the social environment and the environment and give the school the necessary conditions and enable the child to gain equality of education with other friends.
Representatives from the Lists Network presented their requests as follows:
* We want the Wonderful Invasion Commission in the Turkish National Assembly.
* We want Diagnosis, Diagnosis and Rehabilitation Center for New Diseases.
* We would like to consider Strange Fever Societies in a different category.
* We will seek National Policies and Legal Regulations for New Galaxy.
* We want the Belgian Model to be awarded in an organ donation.