Met dank overgenomen van Europese Commissie (EC), gepubliceerd op dinsdag 15 december 2020.
De Commissie verwelkomt het door het Europees Parlement en de Raad bereikte voorlopige politieke akkoord over het nieuwe ambitieuze EU4Health-programma. Het EU4Health-programma zal een belangrijke bijdrage leveren aan het herstel na de COVID-19-crisis door de bevolking van de EU gezonder te maken, de veerkracht van de gezondheidszorgstelsels te vergroten en innovatie in de gezondheidszorg te bevorderen. Het zal ook helpen om de door de COVID-19-crisis aan het licht gekomen lacunes op te vullen en ervoor te zorgen dat de gezondheidsstelsels in de EU sterker staan tegenover mogelijke nieuwe gezondheidsbedreigingen, als onderdeel van een toekomstige robuuste Europese gezondheidsunie.
2National Centre for Indigenous Genomics, Australian National University, Canberra, ACT, Australia
3Department of Pharmacology, Dalhousie University, Halifax, NS, Canada
4Precision Medicine, Platform on Shaping the Future of Health and Healthcare, World Economic Forum, San Francisco, CA, United States
5Institute of Genetics, Canadian Institutes of Health Research, Government of Canada, Ottawa, ON, Canada
6Human Metabolomics, North-West University, Potchefstroom, South Africa
7Facultad de Medicina, Center for Genetics and Genomics, Clinica Alemana Universidad del Desarrollo, Santiago, Chile
8Institute of Health Management, Southern Medical University, Guangdong, China
9KwaZulu-Natal Research Innovation and Sequencing Platform, University of KwaZulu-Natal, Durban, South Africa
10Rare Diseases South Africa, Johannesburg, South Africa
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No deal Brexit could have detrimental impact for four million people in UK living with a rare disease
Experts have warned that a ‘no deal’ Brexit will result in the exclusion of the UK from the 24 European Reference Networks (ERNs) that were established to improve the care of patients bearing the lifelong burden of a rare disease, which require highly specialised diagnosis and treatment.
Rare diseases are rare, and experts are rarer still. European Reference Networks were set up because no single country has the expertise or resources to cover all of the known rare diseases, which number in the thousands
Experts and patient support groups signed a letter in prestigious journal Lancet
Claims dropping out of Europe without a deal on January 1 will endanger lives
It could see Briain lose access to networks established to research rare diseases
These so-called ERNs allow for crucial research to take place internationally and a no deal Brexit will leave the 4 million Brits with rare diseases at a disadvantage