Articles tagged with: EURORDIS
Rare diseases: Tackling unmet needs and evolving the orphan drug environment
05 Jul
Rare diseases: Tackling unmet needs and evolving the orphan drug environment
A ‘Rare Conversation’ with EURORDIS’ Yann le Cam, Alexion’s Camilla Harder Hartvig and MEP Pernille Weiss.
Rare Diseases: Celebrating patient-centred innovation
26 Feb
Rare Diseases: Celebrating patient-centred innovation
After a challenging year, Rare Disease Day 2021 is a wonderful opportunity to recognise the incredible efforts and achievements of patients, their associations and the scientific community, explains Alexander Natz.
Rare Diseases: How European reference networks have improved the lives of rare disease sufferers immeasurably
26 Feb
Rare Diseases: How European reference networks have improved the lives of rare disease sufferers immeasurably
But more can, and must, be done to work together and take ERNs to the next stage, says EURORDIS HealthCare Director Inés Hernando.
Rare Diseases: How the new EU rare disease policy framework provides an opportunity to move from building infrastructures to measuring impact
26 Feb
Rare Diseases: How the new EU rare disease policy framework provides an opportunity to move from building infrastructures to measuring impact
‘Rare 2030’ Foresight Study highlights unmet needs and continued obligation to improve outcomes, explains EURORDIS Health Policy Director Anna Kole.