Members of our medical advisory group work in collaboration with The European Reference Network on Congenital Malformations and Rare Intellectual Disability – thankfully known as ERN-ITHACA to progress research. Just for your information the organisation has been supporting research in a number of ways:
* Establishing a research working group to bring together those with a greater interest in research
* Participation in the cross-ERN Working Group on Research
* Contribution to writing of the European Joint Programme on Rare Disease
* Participation as an ERN in the H2020 SOLVE-RD project
* Circulation of calls for rare disease patients to participate in funded studies being undertaken by partners
* Creating opportunities for trainee research attachments
* Aiming to foster new research collaborations and to write joint grant applications for future funding