HOW EPICARE MAKES A DIFFERENCE FOR THOSE WITH RARE AND COMPLEX EPILEPSIES
Allison Watson, Co-Founder of Ring20 Research and Support UK CIO and Co-Chair of ePAG for EpiCARE
There are currently 13 patient advocates within the Rare […]
There are currently 13 patient advocates within the Rare […]
A key purpose of the 24 European Reference Networks (ERNs) is to facilitate discussion on complex or rare diseases and conditions that require highly specialised […]
Maria Piggin and Sophie Wintrich hold voluntary […]
In Glasgow we participate in three European Reference Networks (ERNs); Rare Bone Disorders (ERN BOND), Rare Endocrine Conditions (Endo-ERN), […]
When I first heard about European Reference Networks (ERNs) a few years ago, I must admit I thought it was impossibly ambitious. I […]
European Reference Networks (ERNs) promote discourse and collaboration on conditions that require consolidation of knowledge and resources to […]
European Reference Networks (ERNs) are inclusive, not exclusive, multi-professional, not single professional networks.
This opening statement from the European Commission (EC) at the first EC […]
Genetic Alliance UK exists to support and promote the wellbeing of individuals and families affected by genetic conditions. We work closely with our […]
I am writing about European Reference Networks (ERNs) as a person living with a rare disease, an inherited retinal degeneration called retinitis […]
In my role as a […]