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It’s Not so Rare

We media, policymakers, industry leaders, researchers, healthcare professionals, and civil society, pledge to transform the landscape of rare diseases in Europe.

We commit to improving how rare diseases are diagnosed, treated, and managed, taking concrete action to reduce delays, improve access to care, and ensure patients benefit from innovation regardless of where they live. Today, too many patients still wait years for answers and face unequal access across countries.

We aim to accelerate diagnosis through better screening, data sharing, and cross-border collaboration; improve access by aligning regulatory and HTA processes; and invest in research, data, and public-private cooperation.

Above all, we pledge to listen to patients, families, and scientists. Their voices must shape the decisions we make.

Looking at their collective impact, they are ‘Not so rare’. We undertake to act until every patient in Europe has access to the care and innovation they deserve.

By signing this pledge wall, we commit to making rare diseases visible and to supporting concrete EU action - towards a European Action Plan and real change for people living with a rare disease.