Post by Kyowa Kirin International plc.

Rare diseases affect millions of people across Europe, yet the journey to diagnosis remains long and complex. Despite significant advances in genomics, treatment options and understanding of disease mechanisms, people living with rare diseases still face an average diagnosis delay of five years from symptom onset to confirmed diagnosis, 90% of which occurs within the healthcare system. That’s why Kyowa Kirin is proud to be a part of the Zebra Diagnosis Coalition, a multi-stakeholder coalition, united by a shared commitment to enabling earlier, more equitable diagnosis for people living with rare diseases across Europe. Last week the coalition hosted its first webinar to present findings from its new White Paper, ‘Barriers to Timely Diagnosis of Rare Diseases’. Among them was Kyowa Kirin’s Senior Director of Government Affairs, Jan Swiderski, and fellow experts from coalition partners EURORDIS and Copenhagen Economics. The panel outlined seven structural barriers driving diagnostic delays, and the need for coordinated policy action: building diagnostic capacity in primary care, clearer referral pathways, integration across care levels and earlier access to diagnostic tools. Read the full White Paper here: https://lnkd.in/enJuX72b