Tag: ERNICA

Experts at CDH UK warn of ‘no deal’ Brexit effects

Chairperson of CDH UK Beverley Power, along with other Rare Disease experts wrote to The Lancet to voice their concerns of a no deal Brexit on the Rare disease community and in particular patients. The correspondence was published in The Lancet in December 2020 and the full letter can be read in our research hub. The letter has been cited and referred to in other publications. you can read the Health Europa article by clicking on the link below No deal Brexit could be detrimental for...

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European Reference Networks (ERNs) What they are and how they work.

CDH UK is very proud to be a founding member of ERNICA which is just one of many European Reference Networks (ERNs). ERNICA was established in 2016 for Inherited and Rare Congenital Anomalies, which includes CDH. We are also a member of the ERNICA Advisory Board and the Scientific Committee. Being a part of this network means that we work as the patient voice for CDH and we also work closely with other conditions (and their respective patient representatives) that are covered by this particular...

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