An integral part of our activities is to provide information about BHD syndrome and related conditions, resources and opportunities for engagement.
Why are we advancing education in medical and molecular genetics?
We aim to offer the public, including those affected by BHD syndrome and related genetic kidney disorders, accurate, comprehensive and clear information about genetic diseases in general, and BHD syndrome in particular, so that individuals may be well-informed and confident to engage with various sources of information and research. Access to reliable information and resources is central to addressing the marginalisation of people affected by rare diseases.
We hope also to engage researchers, people affected by BHD syndrome, and the general public, so that all can benefit from each other’s experiences and knowledge.
During the last four years, our focus was on BHD syndrome and so most of our resources and information are specific to BHD. We now aim to develop similar resources for related genetic kidney disorders.
Our Education Strategy specifies how we plan to carry out this half of our mission.