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.
Education for Patients
Dr Dulce Quelhas – “IEF technique: explanation for families”
A 2013 Barcelona conference report on glycosylation disorders featuring Dr Quelhas’s family-focused presentation on IEF technique.
Dr Dulce Quelhas – “IEF technique: explanation for families” Read More »
The 3rd World Conference on CDG for families and professionals
The 3rd World Conference on CDG brought together 51 families and 73 professionals to advance understanding and treatment worldwide.
The 3rd World Conference on CDG for families and professionals Read More »
