OUR VISIT TO PROF.DR.ONUR BURAK DURSUN, HEAD OF DEPARTMENT OF MINISTRY OF HEALTH, AUTISM MENTAL SPECIAL NEEDS AND RARE DISEASES.

SMA-DER Chairman of the Board Ali Soyer, Vice President Nazlı Demir, Patient Relations and Education Coordinator Ilkay Eldemir, Head of Department of Autism, Mental Special Needs and Rare Diseases, Ministry of Health Prof. Dr. Onur visited Burak Dursun. They conveyed their questions about current treatment methods, medicine continuation criteria, PGD application, newborn screening.
Nusinersen (Spinraza)
prof. Onur Burak Dursun stated that many SMA patients achieved good results with the medicine Spinraza, which contains the active ingredient Nusinersen, and they wish this situation to continue. He said that with the Health Practice Communiqué (SUT) published on February 8, 2022, physical therapy scoring and respiratory criteria for access to medicine were removed. He stated that physicians made a medicine application by making evaluations and then presented them to the scientific committee, and the committee gave a positive response between 96% and 98%. He added that the tests will be repeated for the follow-up of the patients, but will not be seen as a criterion.
Ridiova
He said that the Ministry of Health gave a positive opinion and they hoped for positive developments in the near future.
Zolgensma
He said that they follow all the developments on the subject closely, they do not have enough scientific data and the company does not have an application, they can only talk about the videos. He stated that an official application was made, but they are not ready for this process at the moment, and they hope that there will be a good development in the near future.
Carrier Scan
He underlined that SMA Carrier Screening Tests have started to be implemented in Family Health Centers and that all centers should do this free of charge. He stated that he could apply to CIMER for the problems he experienced in this regard.

PGT
PGT application centers will start operating in 7 provinces, that the inclusion of SMA disease in PGD is a new method; He said that since it is a very detailed, risky and scientific method, a new staff should be formed and in these cases, it affects the process.
SMA Family Information Book
prof. Dr. He said that the SMA Family Information Book, which was prepared under the editorship of Kürşat Bora Çarman, is very important for SMA patients and their families, and that they are ready for all kinds of support to reach more families.
Let's Cling to Life Together Project
He stated that our project and studies on patients connected to ventilators and natural disasters are very valuable, that he expects such solution-oriented studies and projects from all non-governmental organizations, and that he supports and congratulates us.