The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks
An open letter signed by all ERNs calling for a renewed and continuous support to the ERNs was published.
“We, the undersigned, representing the European Reference Networks (ERNs) and people living with a rare disease across Europe, call on the EU institutions and EU Member States’ governments to stand by the European Reference Networks and to uphold their commitment to enable long-lasting impact in people’s lives and, fundamentally, give all people living with a rare or complex condition in Europe the same opportunities to access timely and adequate specialised healthcare.”