Articles tagged with: European Rare Disease policy framework
Op-ed: Patient communities must not be excluded from rare disease research
16 Oct 25 EU Institutions
Op-ed: Patient communities must not be excluded from rare disease research
New EU rules could push patient groups out of vital research projects over their industry links. Yet their voice is indispensable — rare disease research must start with patients.
Rare disease patients cannot be forgotten: a coordinated approach is needed Partner Content
22 May 24
Rare disease patients cannot be forgotten: a coordinated approach is needed
This HAE Day, Hilde Vautmans MEP makes the case for a European Action Plan for Rare Diseases to support Europe's rare disease patients
Championing change for rare disease patients in Europe: the case of hereditary angioedema Partner Content
16 May 24
Championing change for rare disease patients in Europe: the case of hereditary angioedema
Rare Diseases: Towards a patient-centred EU Blood Directive Partner Content
24 Feb 22
Rare Diseases: Towards a patient-centred EU Blood Directive
For rare disease patients who rely on plasma-derived medicinal products, supply has become the major safety issue
Partner Content
26 Feb 21
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.
Partner Content
26 Feb 21
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.
02 Mar 20
Rare diseases are not so rare
With rare diseases affecting some 30 million people in the EU, state welfare should be present in every Member State, providing the appropriate support to these individuals, argues Loucas Fourlas.