Join us for Rare Disease Day 2024 at IBG!
Rare, but not alone!
We are excited to invite you to Rare Disease Day at the Izmir Biomedicine and Genome Center (IBG) – an event organized by the IBG’s EU-funded ERA Chair RAREBOOST project to raise awareness about rare and undiagnosed diseases.
Individuals affected by rare diseases deserve accessible and appropriate medical care, research to achieve correct and timely diagnosis and the best possible treatment for physical, mental, and social well-being. The International Rare Disease Research Consortium (IRDIRC) aims to ensure that individuals affected by rare diseases receive timely and accurate diagnosis, care, and therapy within one year of seeking medical attention.
The Rare Diseases Unit of İzmir Biomedicine and Genome Center (IBG) aims to establish a key center for research, innovation, and knowledge sharing in the field of rare diseases. By promoting collaboration and embracing a multidisciplinary approach across diverse stakeholder groups, we aim to achieve a more comprehensive and effective solution in understanding, diagnosing, and treating rare diseases.
Rare Disease Day at IBG will feature an expert panel discussion on the topic: Rare and Undiagnosed Diseases: Current Situation and Opportunities.
Date: 29.02.2024
Time: 09:00-12:00
Location: Izmir Biomedicine and Genome Center (IBG), Aziz Sancar Auditorium, Dokuz Eylül University Health Campus, Balçova, Izmir – Turkey
Panelists*:
Assoc. Prof. Mehmet Baysan, Istanbul Technical University, Department of Computer Engineering
Dr. Nurdan Bulur, SANOFI, Medical Head SPC: Turkey, Iran, Levant (TIL)
Dr. Gülçin Gümüş, EURORDIS, Research and Policy Senior Manager
Prof. İlhan Satman, İstanbul University, İstanbul Medical School, Department of Internal Diseases
Atty. Güneş Uyar, Rare Diseases Network
*Alphabetically ordered by last names.
Moderators:
Prof. Semra Hız, Dokuz Eylül University Medical School, Department of Pediatric Neurology
Prof. Uğur Özbek, Izmir Biomedicine and Genome Center, Chair, ERA Chair-RAREBOOST Project; Director, Rare and Undiagnosed Disease Platform (IBG-RUDIP)
This event is open to all, and there is no cost to attend. Light refreshments will be served, and there will be opportunities for questions and discussions with the panelists.
Registration Information:
The event registration will start at 9:00 am on the event day.
The panel discussion session will start at 10:00 am.
For online attendance, please follow the link on the event day to attend.
Rare Disease Day has been officially initiated in 2008 by EURORDIS Rare Diseases Europe and is observed each year on the final day of February. The principal objective of the Rare Disease Day is to enhance awareness within the broader community and among policymakers regarding rare diseases and the profound impact they have on the lives of families dealing with these conditions.
Let’s get together on Rare Diseases Day at IBG to contribute to the global effort of raising awareness for rare and undiagnosed diseases. We look forward to your participation!
