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 »
University Hospital of Santiago de Compostela demonstrates the effective use of CPMS platform for rare metabolic disease management.
An online meeting on DCDEs curation for clinicians and medical professionals will take place on 9 December 2021 at 16:00 CET.
EJP RD & ERICA meeting – Domain specific Common Data Elements (DCDEs) Curation Read More »
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 »
The 11th SIMMESN Congress will be held in Bologna from 2 to 4 Dec 2021, focusing on metabolic diseases and newborn screening.
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 »
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 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 »
A free online seminar for paediatricians on early DMD diagnosis will launch in Spring 2022. Take the survey and register interest.
TREAT-NMD DMD Early Diagnosis Training Seminar Read More »
A collaborative network of European cystinosis support groups working to improve care and research for patients since 2016.
Cystinosis European Network Read More »
A comprehensive overview of CDG patient advocacy groups and representatives working to advance awareness, research and treatment options.
CDG Patient Groups and Advocates Read More »
An international network uniting professionals and patient associations to advance research in Congenital Disorders of Glycosylation.
Hey, want to upgrade to pro plan?
Upgrade Now
& get 25% off
Offer valid only for 24 hrs.
