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.
News
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 »
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.
The first survey to reflect on the social and medical needs of rare metabolic patients and families in Europe
A MetabERN survey highlights the social and medical challenges faced by IMD patients and caregivers across 25 European countries.
New study in patients with Smith-Lemli-Opitz syndrome
A study published in Biomolecules explores the biochemical and clinical effects of Vitamin E in Hungarian SLOS patients.
New study in patients with Smith-Lemli-Opitz syndrome Read More »
Medics4RareDiseases and MetabERN to announce a mutual collaboration
Some exciting news to share! MetabERN and Medics4RareDiseases are eager to combine their efforts, establishing future collaboration.
Medics4RareDiseases and MetabERN to announce a mutual collaboration Read More »
