The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place. Leading, inspiring and engaging all stakeholders to take…
VASCERN will participate in the the international rare disease day on the 28th February. Upcoming information soon…
The eleventh edition of the Black Pearl Awards will take place online on Tuesday, February 8th, 2022 from 18:00 until 19:30 CET and will bring together persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals, industry representatives, and more. Registration for the Online Ceremony is now…
In the context of EJP RD’s ERN Workshops, an in-person workshop titled “Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment” aimed at sharing participants’ expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being…
The VASCERN MSA-WG Monthly Meeting will be taking place on January 10th, 2022 at 5.00 pm (Paris time).
The VASCERN HHT-WG Monthly Meeting will take place on January 28th 2022 at 8.00 AM (Paris time).
VASCERN will hold a webinar on Thursday January 20th, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Venous Malformations with Professor Laurence BOON, plastic and reconstructive surgeon from Cliniques universitaires Saint-Luc, Brussels, Belgium. This will be the the third of a series of four webinars exploring the Patient (Diagnostic…
The European Joint Programme on Rare Diseases announced on December 14th 2021 the official launch of the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases. The aim of the funding opportunity is to…
In the context of EJP RD’s ERN Workshops, a hybrid workshop on “contemporary outcome measures in neuromuscular diseases” aimed at understanding the advancement of technologies with digital outcome measures in neuromuscular diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice.The hybrid event (in-person on site and online by videoconference) will take place over two days on: March 4th – 5th, 2022 at…
The VASCERN HHT-WG Monthly Meeting will take place on December 23rd 2021 at 8 am (Paris time).
