Contact us and we will help you connect with the appropriate organisation!
You can complement this information by looking at:
- Orphanet which provides a directory of professionals and institutions and expert centres. CDG hub also provides a list here.
- MetabERN is a European non-profit network established by the EU to facilitate access to the best available care and address the needs across the border of all patients and their families affected by inherited metabolic rare diseases. MetabERN represents 92 nationally certified Healthcare Providers from 27 European Member States, 41 Patients Organisations and is endorsed by the Society for the Inborn Errors of Metabolism (SSIEM). Check the MetabERN map gathering medical centres here.
What are the benefits of putting your reference centre and/or specialist on our World CDG diagnostic and/or research laboratories map? This powerful tool can be used in many ways, such as to (1) help patients find a professional in their own country and to provide a platform for future diagnostic and/or research and analysis efforts that will be done in collaboration (2) accelerate definitive correct diagnosis and decrease time to diagnosis, (3) create an enabling network that can boost the co-organisation of events and training among different stakeholders, and (4) amplify opportunities to advance diagnosis and care for people living with CDG and their family members. This avoids unnecessary tests and treatments.
Would you like to feature your work in CDG or a reference care centre or specialist that leads care and management for people living with CDG in your country in our CDG Map? It’s easy! Complete the CDG Map Collecting Survey , found at the end of this webpage!
