VASCERN Spotlights: Dr. Robert Damstra

VASCERN Spotlights: Dr. Robert Damstra  What is great about the ERNs is that they have given increased recognition to the field of rare diseases. For a very long time it was mainly secondary lymphedema (that is not a rare disease) that had all of the attention and now, thanks to…

Continue reading

Professor Miikka Vikkula wins First Generet Award!

We would like to congratulate Professor Miikka Vikkula, our Vascular Anomalies Working Group (VASCA-WG) Chair, for being awarded the first Generet Award, with a prize of €500,000 for research into rare diseases! The Generet Fund, managed by the King Baudouin Foundation, aims to support rare disease research by awarding an annual…

Continue reading

New #EUProtects video featuring the ERNs!

The European Commission’s EU Protects campaign (#EUProtects) aims to raise awareness of the various ways in which the EU combats global challenges to protect its citizens and their latest video features the European Reference Networks (ERNs)!  Link to the video here The video features the story of Onni, a Finnish…

Continue reading

VASCERN Representation in the interERN WG on Research

VASCERN continues to expand its participation in the interERN Working Groups (WGs)! We are happy to announce that our representatives in the new interERN and Board of Member States (BoMS) integrated WG on Research will be: HHT-WG Chair, Professor Claire Shovlin (Hammersmith Hospital, Imperial College Healthcare NHS Trust, London, UK) and VASCA-WG…

Continue reading

VASCERN Spotlights: Professor Claire Shovlin

VASCERN Spotlights: Professor Claire Shovlin I hope that across the diseases that VASCERN champions, the wisdom, dedication and experience of the medical doctors can be channeled into further, genuine healthcare improvements for patients and their families. It is with great pleasure that we present this month’s member in the VASCERN…

Continue reading

#ProtectERNs Campaign!

With the UK set to leave the European Union (EU) on March 29th 2019 (followed by a proposed 2 year transitional period), much is still unclear when it comes to the future participation of the UK in the European Reference Networks on rare diseases. Genetic Alliance UK has developed a statement, in…

Continue reading