EGMEDC advances coordinated access to genomic medicine in Europe.
A pan-European, non-profit consortium uniting all stakeholders to advance the clinical translation of genomic therapies.
A Europe where patients with genetic diseases have timely, equitable access to safe, effective genomic therapies - developed, regulated, and delivered through shared European collaboration.
EGMEDC advances the development and delivery of CRISPR-based and related genomic therapies across Europe by uniting all stakeholders: patients, clinicians, researchers, industry, and policymakers. We create space for open dialogue, shared learning, and cross-sector alignment so that no part of the ecosystem works in isolation.
By coordinating these efforts, the consortium aims to build an ethical, sustainable ecosystem for the clinical implementation of genomic therapies, and thereby to ensure timely, safe, and equitable access for patients.
Three areas of focus from EGMEDC's broader strategic aims.
Clinical translation
Advance the path from preclinical research to approved therapies by supporting trial design, manufacturing readiness, and clinical adoption across European healthcare systems.
Patient access & equity
Ensure that advances in genomic medicine reach patients who need them, with attention to rare disease communities, reimbursement, and equitable access across member states.
Regulatory & policy alignment
Engage with regulators and policymakers to shape frameworks that enable safe, timely approval and delivery of CRISPR-based and related genetic therapies.
How we work
EGMEDC operates as an open consortium built on transparent governance, pan-European collaboration, and evidence-informed advocacy.
We bring together all stakeholders - patients, clinicians, researchers, industry, and policymakers – respecting national contexts while building shared European capacity.
We are constituted as a non-profit association with transparent governance and clearly defined roles for our secretariat, executive board, advisory board, partners, and members.
Our positions are grounded in clinical, scientific, and patient perspectives, not commercial interests.
Gene therapy for ultra-rare neurodegenerative diseases is no longer hypothetical, yet access remains uncertain and uneven. The case of August and his parents’ attempts to access experimental genomic medicine for a progressively debilitating condition illustrates how fragmented regulation, funding barriers, and slow clinical translation continue to delay care, often with irreversible consequences.
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Why coordination matters
Voices from across the genomic medicine ecosystem on the importance of a united European approach.
Patient perspective
“Being in the situation where you have a child with an ultra-rare disease is extremely frustrating, because you are absolutely alone. [...] I really hope the consortium will be a help for other patients and other families, so they will never be in the same situation as we have been in.”
Søren Jarl Christensen
Patient Advocate
Sammen for August: https://sammenforaugust.dk/
Transparency
EGMEDC is committed to open governance and clear communication. Governance documents, press materials, and strategic overviews are published as Resources: the documents that make our work transparent and accessible, not gated behind membership.
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Søren Jarl Christensen
Cecilia Jimenez MallebreraCo-chair of Executive BoardInstitut de Recerca Sant Joan de Déu, Hospital Sant Joan de Déu Barcelona
Alessia CavazzaExecutive BoardUNIMORE / UCL
Ellen KoekoeckxExecutive BoardPatient Advocate / FAST
Emmanuel MussaultExecutive BoardPatient Advocate
Özcan MetExecutive BoardCCIT-DK