SEE, HEAR, SMILE PROGRAMME
OIFE has previously hosted four successful topical meetings (2006, 2009, 2012 and 2015) and each time we have chosen a topic that has (too) little focus in the professional community. With the 2019 topical meeting “See, Hear, Smile!”, we’d like to focus on some not so common clinical features of OI for the first time.
The goal of the Topical Meeting “See, Hear, Smile!”. is to create an arena to present newer research, treatment methods related to eyes, ears and teeth of people with OI.
The topic also includes neurological issues affecting the head/brain (basilar invagination), which is a very severe side effect of OI with hardly any knowledge in both the professional and patient community. Recommendations of follow up of both children and adults with OI related to the topic will also be discussed. We will also include some lectures relevant for other rare bone diseases. Our hope is to create new informal networks between professionals working on these topics (dentists, hearing doctors etc) and that it can inspire new projects and ideas. There is very little knowledge on several of the topics today, even if hearing loss and neurological issues (basilar invagination) are severely affecting the quality of life of more than 50% of people with OI. There are treatment methods available, but in the majority of countries, they are non-existing because of the lack of knowledge.
We hope and believe that attendance from the OI-community can also bring new ideas and perspectives. Previous Topical Meetings hosted by OIFE have turned out to be excellent arenas for international exchange between professionals and people with OI. We are firm believers that the topical meeting will contribute enhancing the dialogue between our member organizations, our volunteers and clinicians and researchers working in the field – also in newer fields where we have no established networks at the moment.