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
Read the open letter in full here.