October 4, 2022
IPOPI takes part in the launch of the AGORA consortium
Johan Prevot, IPOPI’s Executive Director, took part in the launch meeting of the AGORA consortium on 22nd September 2022 in London (UK). The new consortium, named AGORA (Access to Gene therapies fOr Rare diseases) aims to facilitate access to effective gene therapies for the treatment of patients with ultra-rare diseases, in Europe.
The meeting, held at London’s Great Ormond Street Hospital for Children (GOSH), was attended by founding members from six countries representing academic groups, regulators, funders, patient advocacy groups and drug developers. Ultimately, the consortium aims to explore the creation of an independent, sustainable, not-for-profit entity that can support marketing authorisation, delivery and access to therapies which are not commercially sustainable and therefore would be unavailable to patients.
In the short-term AGORA will seek to explore the hurdles that currently exist and identify areas of potential change to enable sustainable access to treatments, better highlighting the scientific value, competence and high expertise of the consortium which will provide new ideas and solutions.
IPOPI is committed to continuing its collaboration with the AGORA consortium and all relevant stakeholders in the field of gene therapies.
