“Future Vision” Panel by Acıbadem University İSTisNA Platform

Rare diseases, which many of us have never even heard of, deeply affect approximately 300 million people worldwide and 5 million people in our country. Moreover, 70% of these diseases, which can shorten life expectancy if not diagnosed and treated early, occur in children! For this reason, events have been organized in February since 2008 both globally and in our country to raise awareness about rare diseases. One of the significant events held to raise awareness about rare diseases—over 7,000 of which, like SMA, are largely genetic—was organized at Acıbadem University. Artist Haluk Levent, President of the AHBAP Association, participated in the event with his messages to contribute to social awareness.

The European Organization for Rare Diseases (EURORDIS) has designated February 29—a "rare" date—as Rare Disease Awareness Day. Additionally, throughout February, recognized as Rare Disease Awareness Month, numerous events are held to highlight the challenges faced by individuals who struggle to receive timely and accurate diagnoses, preventing them from accessing appropriate treatment.

One such pivotal event took place at Acıbadem University, focusing on the awareness of over 7,000 rare diseases, most of which, like SMA, have a genetic origin. As part of the İstanbul Diagnosis and Rare Diseases Solution Platform (İSTisNA) project—supported by the İstanbul Development Agency and jointly conducted by Acıbadem University's Rare Diseases and Orphan Drugs Research and Application Center (ACURARE), İstanbul University, and the Aziz Sancar Institute of Experimental Medicine (AS-DETAE)—a panel titled “İSTisNA Platform Future Vision” was held on February 25, 2025. The event was moderated by Prof. Dr. Yasemin Alanay, Director of ACURARE and a distinguished expert in rare diseases, alongside the celebrated artist and AHBAP Association President, Haluk Levent.

The event brought together all İSTisNA stakeholders, including patients, their families, representatives of rare disease associations, and researchers. The panel served as a platform to discuss the progress made within the project, outline future objectives, and foster collaboration among key players in the field. The event also garnered significant attention from the media.