- Our studies in the education field started with the “Not as Rare as We Think” event, organized in conjunction with the Students’ Society on Rare Diseases on November 1, 2021.
- The first training session entitled 8th Sensitive Touch “Rare Diseases in Neonatology”, held on January 14–15, 2022, was attended by 538 participants, .
- To contribute to education and the raising of public awareness, events were held between February 28 and March 1, 2022 on Ankara University’s Morphology campus to mark February 28 “Rare Disease Day”. http://www.medicine.ankara.edu.tr/2022/02/15/renginle-nadir-olani-kesfet-etkinligi-28-subat-2022/ During the event, speeches were made to raise awareness among healthcare professionals of the issue of rare diseases, providing advice on early diagnosis and teamwork, and a workshop was held on the rare “Gaucher’s Disease”. There were also presentations to raise public awareness of rare diseases, a board painting activity for students, and preparation of posts planned for dissemination on social media.
- An “Advanced Clinical Practices” education program for Rare Diseases approved by the Ministry of Health was held with 80 participants on March 24–25, 2022.
- The Rare Diseases Application and Research Center (NADİR) responded to an invitation from Global Medical Grants (GMG), which provides support to research and training programs to improve patient follow-up and treatment, and was awarded US$50,000 as an “Independent Medical Education Grant” in the field of “Multidisciplinary Gene Therapy Training in Monogenic Diseases – Recombinant Adeno-Associated Virus (rAAV) http://www.medicine.ankara.edu.tr/2022/02/17/nadir-merkezimiz-egitim-fonu-ile-odullendi/. Information about the training provided under the project on January 13, 2023 can be accessed athttps://www.genterapisi.com/.
- Associate Professor Doctor Engin Köse and Lecturer Specialist Doctor Hatice Mutlu spoke at a conference on “Frequently Asked Questions About Hereditary Metabolic Diseases and the Genetic Diagnosis Process”, which was broadcast through the “ankarauniversitesi_nadir” official Instagram account of the Rare Diseases Application and Research Center, on April 30, 2022. A large number of physicians, medical school students, patients with rare diseases and their families followed the conference.
- “Low Protein Nutrition Awareness Day Events” are planned to be held on the terrace of Ankara University Medical Faculty Children’s Hospital in May 2022. Patients who follow a low-protein diet and who have been diagnosed with a hereditary metabolic disease have been invited to participate at the event with their families, where low-protein recipes will be prepared by a chef in collaboration with the participants, and coloring, balloon flying, and lots will be drawn for children together with the child support group.