Do’s and Don’ts Factsheets for Pediatric and Primary Lymphedema available!
A new chapter of Do's and Don'ts on Pediatric and Primary Lymphedema (#PPL) has now been added to the VASCERN Do’s and Don’ts Factsheets for Rare Vascular Disease Patients Facing Frequent Situations! Well done to the PPL-WG! ?? We now have factsheets for Marfan syndrome, vascular Ehlers-Danlos syndrome (vEDS), Hereditary Haemorrhagic Telangiectasia (HHT) and Pediatric and Primary Lymphedema (PPL)! Take a look here: https://vascern.eu/dos-and-donts-factsheets-for-pediatric-and-primary-lymphedema-available/
and make sure to share these new factsheets! @Nederlands Nederlands Netwerk voor Lymfoedeem & Lipoedeem - NLNet BeLymph The British Lymphology Society International Lymphoedema Framework Michael Oberlin Natascha Assies ... See more
EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join.The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET.In this meeting, the organisers will begin to curate the list of Domain specific Common Data Elements (DCDEs) compiled by the EJP RD FAIRification stewards from the data dictionaries provided by the ERN registries. The aim of the DCDEs is to be able to share domain specific data between ERNs, data that is not currently covered by the Common Data Elements (CDEs).More information and registration here: https://erica-rd.eu/event/domain-specific-common-data-elements-dcdes-curation/