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.
News
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 »
IEMbase mobile app version 1.0 is live
The IEMbase announced the creation of the IEMbase mobile app version 1.0, which is now available for Android and Apple devices.
IEMbase mobile app version 1.0 is live Read More »
ERN Exchange programme – knowledge sharing among ERN members
The programme is beginning. The ERN Exchange Programme aims at harmonising specific knowledge within the ERNs and reducing gaps in expertise.
ERN Exchange programme – knowledge sharing among ERN members Read More »
EMERGENCY PROTOCOLS FOR PATIENTS WITH FAOD OR GSD | 22 JUNE 2021
An emergency letter and knowing how to use it can prevent life-threatening situations and will optimize communications between parents and doctors.
EMERGENCY PROTOCOLS FOR PATIENTS WITH FAOD OR GSD | 22 JUNE 2021 Read More »
10 Principles for Greater Patient Empowerment
Weber Shandwick, in collaboration with EU patient groups, trade associations and policy-makers has produced a set of 10 principles and actions.
10 Principles for Greater Patient Empowerment Read More »
‘Un Amico Raro’ – An animated cartoon to explain the Anderson-Fabry disease
‘Un Amico Raro’, the special episode of the animated tv series “Leo da Vinci” broadcast on Rai Ragazzi, depicts the story of a young kid living in the 16th century suffering from Anderson-Fabry disease.
‘Un Amico Raro’ – An animated cartoon to explain the Anderson-Fabry disease Read More »
