#ProtectERNs

/Case Studies/

January 2019

PRESERVATION OF THE UK IN ERNs – WHAT COLLABORATION MEANS FOR PATIENTS AFFECTED BY RARE BLOOD DISORDERS

2019-01-30T09:47:23+00:00January 28th, 2019|

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

2019-01-21T12:17:28+00:00January 21st, 2019|

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

2019-01-16T10:54:56+00:00January 15th, 2019|

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

2019-01-07T14:17:43+00:00January 7th, 2019|

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

2018-10-24T13:34:55+00:00October 24th, 2018|

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 […]

September 2018

THE IMPORTANCE OF THE UK REMAINING PART OF EUROPEAN REFERENCE NETWORKS

2018-10-24T12:30:56+00:00September 13th, 2018|

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 […]