RareBoost in the News
A collection of RareBoost activities that have been featured on various Turkish news outlets.
‘We are talking about DMD’ Symposium – September 2024
RareBoost, with the support of the ‘Hedef DMD’ (Target DMD) project, organized a symposium to inform primary healthcare professionals on the rare neuromuscular disease ‘Duchenne Muscular Dystrophy’. The event was featured in multiple newspapers including ‘Türkiye Gazetesi‘ and ‘Cumhuriyet’in Egesi‘.
Helene and Mikk Cederroth Seminar – June 2024
In June 2024, Helene and Mikk Cederroth who are the founder’s of the Wilhelm Foundation, visited IBG and the RareBoost team within the activities of RareBoost Scientific and Ethics Advisory Board. Ms. Cederroth gave a seminar on the Wilhelm Foundation’s mission and progress, detailing the Undiagnosed Hackathon events and the work of Undiagnosed Diseases Network International (UDNI).
Ms. Cederroth’s visit and SEAB meeting was featured in several news outlets, including SonDakika.com and HaberTurk.com.
Radio Program ‘Ailece’ to discuss Rare Diseases – February 2024
On February 28 2024, Dr. Uğur Özbek and Dr. Pınar Gençpınar were the guests of the radio program ‘Ailece‘ to discuss rare diseases. Dr. Özbek and Dr. Gençpınar explained rare diseases and the need for better awareness. They also answered the host’s questions on the current state of rare disease diagnosis and treatments in Turkey and around the world, and what can be done to improve the diagnostic and treatment processes.
Rare Disease Research Needs Workshop – December 2023
On December 22 2023, “Rare and Undiagnosed Diseases Research Area Stakeholders Status and Needs Assessment Workshop” was held at the IBG. The workshop brought 68 experts, officials, and advocates together to discuss the challenges related to the diagnosis, treatment, and awareness of rare diseases.
The news of the workshop was published by the media channels such as Yeni Asır newspaper.