RARE DISEASES DAY ONLINE PRESS CONFERENCE

"With carrier screening programs and PGD (Preimplantation Genetic Diagnosis), it is possible to contribute to the national health economy, to a healthy life for the future, and to present sunny days to mothers." ⁣ “With carrier screening programs and PGD (Preimplantation Genetics), it is possible for me to contribute to the national health economy, a healthy life to future generations and sunny days to mothers. ”⁣

“Hundreds of diseases can be diagnosed with extended newborn screening! Newborn screening tests prevent the baby's mental retardation, irreversible brain damage, possible organ losses, various disabilities and premature loss due to diseases. Transforming the current screening program into an extended neonatal screening program with expert and infrastructure support is very important and beneficial for healthy generations. “Invisible disability is the invisible face of the iceberg for rare patients! In order to develop empathy in society from 7 to 70, starting from the first level of education, it should be integrated into the curriculum and social awareness should be started at a young age.

"Organ Donation Saves Lives! 1 person can give life to 8 people with the organs he donates! Social awareness about organ donation should be maintained in cooperation with all state institutions and the media, the Red Crescent should take an active role, the organ donation law should be revised and the process should be facilitated."

“Medicines of rare patients should be included in the reimbursement list immediately by the Social Security Institution (SGK) and the Ministry of Treasury and Finance. As Rare Diseases Network, we are always ready to support, participate and be a stakeholder in all solution processes of the public health authority. Encouraging and supporting studies in the field of "orphan drugs" will ensure that drugs are accessible. ⁣

“One of the most common situations faced by individuals with rare diseases at the community level is discrimination. The individual and the state should stand shoulder to shoulder against discrimination. An individual needs interaction, regardless of whether he is in good health or even if he or she will not be able to speak or move throughout his life. Social rights are among the most basic human rights. ⁣