ERDERA’s Opening Ceremony Congregates Nearly 600 Participants to Mark the Start of the New Partnership
Nearly 600 people followed ERDERA opening ceremony either online or in person in central Paris on 28 October. We summarise next some highlights from the speakers who took the floor during the event that marked the start of a new era in rare disease research.
“The National Mirror Group was the first time patients had been treated as equal partners in this kind of forum, and it immediately changed the conversation”
Sandra Alves, a senior human-genetics researcher at the National Institute of Health Dr Ricardo Jorge (INSA), has coordinated Portugal’s National Mirror Group (NMG) for rare diseases since its creation in 2021. Under her guidance, this well-established NMG links policymakers, clinicians, scientists and patient organisations, channeling Portuguese priorities into European initiatives such as the European Rare READ MORE