Reference Networks News Today

Departments, alise jordan. Communication strategist and political contributor, rick tyler. Willie, that interaction that pete had with the hecklers, there were a few of them, it seemed like the audience made a space for it, and he brought it home. Yeah. There was a heckler there. A little bit of mccain there. Yelling about sodom and gomorrah, protesting that pete ambigui buttigieg was married to his husband. The reason he is doing well is he performs well every time he comes out. You cant come o...

Rare diseases are medical conditions that affect a small percentage of the population

At its conference in Bilbao, the European Economic and Social Committee (EESC) urged the European Union to launch a European action plan stepping up cooperation between national health systems.

<strong>Letter:</strong> The absence of an agreement on participation in European Reference Networks has negated years of progress on providing the best care for patients, says <strong>Prof Marc Tischkowitz</strong>

Europe’s hub for health data is expected to launch later this year, and patient groups are optimistic about its potential.

Today, more than 6,000 rare diseases are affecting up to 36 million people in the EU. For those living with rare diseases - many of them children - quality …

The European Health Data Space has the potential to be the foundation for a truly integrated health care system in Europe

The Treatabolome project is a research initiative to develop a freely available, interoperable online platform to disseminate rare disease and gene-specific treatment information to healthcare professionals regardless of their level of specialized expertise to reduce treatment delays. This initiative is highly relevant to neuromuscular disorders as they are rare diseases by definition. In this special issue of the Journal of Neuromuscular Diseases, experts contribute Treatabolome-feeding systema...

The Treatabolome project is a research initiative to develop a freely available, interoperable online platform dedicated to disseminating rare disease and gene-specific treatment information to healthcare professionals regardless of their level of specialized expertise.

Date Time Share 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 s...