Across Europe, more than 36 million people live with rare genetic diseases, many caused by single-gene mutations that have historically left patients with severe, life-limiting conditions and no effective treatments. While breakthrough CRISPR technology can now correct faulty DNA to treat genetic causes, there are barriers to these scientific advances reaching everyday clinical practice. Fragmented regulation, legal and economic obstacles, and limited cross-border coordination across European healthcare systems mean that many patients still face critical delays, or no access at all, to these potentially life-saving gene therapies.
To bridge this gap between pre-clinical science and patient care, the third CRISPR Medicine Conference (CRISPRMED26) in Copenhagen — bringing together over 450 scientists, clinicians, and patient advocates — served as the launchpad for the European Genomic Medicine Consortium (EGMEDC). Convened by CRISPR Medicine News alongside strategic founding partner Copenhagen Legacy Lab, the non-profit initiative was officially launched on the opening day with 15 founding partners from 12 European countries. Supported by key perspectives from Member of the European Parliament Stine Bosse, Rare Diseases Denmark, and the father of a child living with a rare genetic disease, the launch established a unified coalition dedicated to tackling regulatory hurdles and systematically integrating patient needs.
“Together, we will be able to realise the potential of CRIPSR, not just for one child, but for many.”
With its secretariat established in Innovation District Copenhagen, EGMEDC now provides a permanent European hub to transition validated gene science directly into clinical practice. Holding bi-monthly progress meetings and hosting annual gatherings alongside future CRISPRMED conferences, the initiative has already expanded with four new partner members, hired core secretariat staff, and added two patient advocates to its executive board — ensuring the event’s legacy continues to actively expand equitable therapy access across Europe.
View the Case Study here:
Further Learning:
Event website: CRISPR Medicine Conference 2026
Copenhagen Legacy Lab: Cases from Congresses
View / download Copenhagen Legacy Lab’s publications and find inspirational tools to support your legacy process here
