AGORA: New consortium for improved gene therapy access in Europe

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IPOPI was pleased to represent the PID patients’ community at the first meeting of the AGORA (Access to Gene therapies fOr RAre disease) consortium. The new consortium, launched on September 22, aims to facilitate access to gene therapies for patients with ultra-rare diseases, in Europe. The meeting was held at London’s Great Ormond Street Hospital for Children (GOSH) and attended by founding members from six countries representing academic groups, regulators, funders, patient advocacy groups and drug developers.

Long and short-term objectives

Ultimately, AGORA aims to create 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, highlighting better 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.

Read the AGORA press release.