The Marfan Foundation announces the “Marfan Syndrome and Related Disorders Empowerment Series”, a new series of webinars that will focus on topics that aim to improve the quality of life of people living with Marfan Syndrome and related disorders. Their first webinar will be on January 30th, 2018 at 3PM …
We are excited to report on a new large-scale research Program called Solve-RD! The Solve-RD research program is a project funded by the EU’s Horizon 2020 that will directly involve the European Reference Networks (ERNs) in order to diagnose currently undiagnosed rare disease patients using the latest in genetic technologies …
The 22nd ISSVA (International Society for the Study of Vascular Anomalies) International Workshop will be held in Amsterdam, Netherlands from May 29-June 1st, 2018. This biannual meeting will be co-chaired by Prof Leo Schultze Kool (co-chair of the VASCA WG and chair of the Patient Registry WG) and will be attended …
EURORDIS has published a position paper on patient access to rare disease therapies entitled “Breaking the Access Deadlock to Leave No One Behind”. Due to major scientific advances and a favourable legislative environment, there has been a dramatic increase in the number of rare disease therapies developed in the last …
Eurordis’ Rare Barometer Voices has a new survey entitled “Sharing my health information: why, how, and with whom?” that aims to collect the thoughts of patients (and/or their family members/carers) on the topics of data protection and data sharing. With the increased number of initiatives requesting access to patient data to support …
