genetic research

Anyone on this forum knows of any state-of-the-art research in seb derm? From what I could tell by googling etc is that at this point no one in the world is really doing any hope giving research in seb derm. Most of the clinical trials and research is focussed on testing current antifungals etc to manage seb derm.
If no one is working on it then there will never be a solution. Is there any forum/place where people can lobby for more research (genetic) in seb derm? My doctor told me that seb derm is not a "hot" reserach area at all. Tweet