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 […]
June 2019
May 2019
HOW ERNS PROVIDED AN INNOVATIVE WAY TO TREAT COMPLEX FEMALE UROGENITAL TRACT ABNORMALITIES
Michelle Battye, eUROGEN Centre Manager
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 […]
January 2019
PRESERVATION OF THE UK IN ERNs – WHAT COLLABORATION MEANS FOR PATIENTS AFFECTED BY RARE BLOOD DISORDERS
Maria Piggin, Chair of PNH Support, and Sophie Wintrich, CEO of MDS UK
Maria Piggin and Sophie Wintrich hold voluntary […]
THE UK RISKS BRAIN DRAIN IF WE CRASH OUT OF THE EUROPEAN REFERENCE NETWORKS
Professor Faisal Ahmed, Office for Rare Conditions, Royal Hospital for Children, Glasgow
In Glasgow we participate in three European Reference Networks (ERNs); Rare Bone Disorders (ERN BOND), Rare Endocrine Conditions (Endo-ERN), […]
PARTICIPATING IN THE EUROPEAN PATIENT ADVISORY GROUP FOR ERN-EYE
Russell Wheeler, Leber’s hereditary optic neuropathy (LHON) Society
When I first heard about European Reference Networks (ERNs) a few years ago, I must admit I thought it was impossibly ambitious. I […]
THE IMPORTANCE FOR UK HOSPITALS TO BE ABLE TO CONTINUE TO TAKE PART IN EUROPEAN REFERENCE NETWORKS AFTER BREXIT: A PATIENT PERSPECTIVE
Thomas Smith, rare disease patient advocate
European Reference Networks (ERNs) promote discourse and collaboration on conditions that require consolidation of knowledge and resources to […]
October 2018
SUSTAINED INVOLVEMENT OF UK HOSPITALS IN EUROPEAN REFERENCE NETWORKS IS POSSIBLE
Matt Bolz-Johnson, EURORDIS, Healthcare and ERN Advisor
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 AND EUROPEAN REFERENCE NETWORKS
Dr Jayne Spink, Chief Executive, Genetic Alliance UK
Genetic Alliance UK exists to support and promote the wellbeing of individuals and families affected by genetic conditions. We work closely with our […]
September 2018
THE EFFECT OF BREXIT: EUROPEAN REFERENCE NETWORKS
Avril Daly, Vice President of EURORDIS, CEO of Retina International
I am writing about European Reference Networks (ERNs) as a person living with a rare disease, an inherited retinal degeneration called retinitis […]
THE IMPORTANCE OF THE UK REMAINING PART OF EUROPEAN REFERENCE NETWORKS
Professor Maurizio Scarpa, Director of the Centre for Rare Diseases Helios Dr Horst Schmidt Kliniken, Coordinator of the European Reference Network for Hereditary Metabolic Diseases
In my role as a […]