Accompanying event of the Slovenian Presidency on Newborn Screening – Recordings available
A Slovenian Presidency event explored newborn screening equity in the EU. Watch expert presentations now on YouTube.
“ERNs towards integration” – Online Italian event for the ERN community
An Italian online event on 30 Nov 2021 will explore the role of ERNs in rare disease care, research, and patient involvement.
“ERNs towards integration” – Online Italian event for the ERN community Read More »
11th National Congress of the Italian Society for the Study of Hereditary Metabolic Diseases and Newborn Screening
The 11th SIMMESN Congress will be held in Bologna from 2 to 4 Dec 2021, focusing on metabolic diseases and newborn screening.
Friends of Europe Report – Building a path for rare diseases in the European Health Data Space
A Friends of Europe report explores how the European Health Data Space can support rare disease patients through data sharing and digitalisation.
Metabern & ISNS meeting – Moving towards NBS as a system: Setting out the roadmap
Experts and patient representatives discussed newborn screening registries, case definitions, and a roadmap for an equitable NBS system.
Metabern & ISNS meeting – Moving towards NBS as a system: Setting out the roadmap Read More »
Drug development and how best to work with specialised Rare Disease networks – webinar
A webinar on 9 Nov will explore drug development and collaboration with Rare Disease networks to improve patient care.
Drug development and how best to work with specialised Rare Disease networks – webinar Read More »
c4c – paediatric clinical trials awareness campaign
c4c launches a European campaign to raise awareness of paediatric clinical trials. Take the survey and share your opinion.
c4c – paediatric clinical trials awareness campaign Read More »
Prof. Maurizio Scarpa in the AIAF IN CONNESSIONE meeting
Prof. Scarpa discussed COVID-19 vaccines and ERN recommendations for Lysosomal patients at the AIAF IN CONNESSIONE meeting.
Prof. Maurizio Scarpa in the AIAF IN CONNESSIONE meeting Read More »
EJP RD – Expression of interest to participate in the first online paediatric expert patients training workshop
Young rare disease patients (12-18) can apply for an EJP RD training on research and advocacy. Applications close on 30 October 2021.
The redesigned MetabERN website is online!
MetabERN’s new website offers improved navigation, patient resources, and updated content for the rare metabolic disease community.
The redesigned MetabERN website is online! Read More »
Changing the clinical picture of MPS – Preceptorship medical course (in-person)
An in-person course on MPS for clinicians and nurses will be held in Manchester on 11-12 Nov 2021. Limited places available.
Changing the clinical picture of MPS – Preceptorship medical course (in-person) Read More »
Achieving Equity and Innovation in Newborn Screening and in Familial Hypercholesterolemia Paediatric Screening across Europe
A Slovenian Presidency event on 11 Oct 2021 will explore equity and innovation in newborn and FH paediatric screening across Europe.
