A new research project explores Smith-Lemli-Opitz syndrome’s lifelong impact, inviting European families to share their experiences.
Patient representatives for Smith-Lemli-Opitz syndrome are looking for European families Read More »
MetabERN’s European survey on pregnancy and family planning for rare disease patients and clinicians aims to improve healthcare standards.
Pregnancy and Family Planning in rare diseases: a survey for patients and clinicians Read More »
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 »
Young rare disease patients (12-18) can apply for an EJP RD training on research and advocacy. Applications close on 30 October 2021.
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 »
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 »
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 »
MetabERN launches an online emergency protocol generator for patients with fatty acid oxidation and glycogen storage disorders.
Generic Emergency Protocol Read More »
New initiative explores patient experiences in rare disease care to improve healthcare services and clinical guidelines development.
“Patient Journeys”: improving care by patient involvement Read More »
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
First EU citizens using ePrescriptions in other EU country Read More »
The EUProtects campaign showcases how European Reference Networks demonstrate EU collaboration in healthcare protection.
EUProtects Campaign Read More »
A collaborative research questionnaire developed to advance understanding of immune system function in CDG patients and caregivers.
Patient Centred Research Tool Read More »
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