Ultimately, all the information produced by www.bhdsyndrome.org is done so in an attempt to inform the BHD community, whether you’re a clinician, a patient or a lab scientist. Every so often, I come to appreciate how rare BHD Syndrome is and in turn, how unfair this seems – I’m reminded when a comment left on the forum says that a member had to tell their family doctor about BHD Syndrome and ask for a referral, or when scientists enquire about specific antibodies.
Having worked in cancer research in the past I know how easy it is to take for granted how easy it is to identifiy resources when planning future experiments, but for researchers investigating the function of Folliculin for example, this may not be so easy. Id like to take this opportunity to remind any researcher that we’ve recently updated our ‘Laboratory Essentials’ resources, where you’ll be able to find any BHD related cell line, antibody or how to access an animal model. Similarly the ‘BHD Literature Database’ remains free to download and contains an up to date account of publications relating to BHD Syndrome. Our Article Library even provides direct access to freely accessible papers and even has a sub-category relating to kidney cancer in general. Why not discuss pertinent questions in our Resources Forum?
Comprehensive information surrounding the symptoms that develop in BHD Syndrome and how they can be treated is provided in the ‘Families’ section. We hope individuals with BHD Syndrome (or anyone affected by it) find this useful, but perhaps one of the most useful tools on this website is the interactive forum. I’ve previously discussed the support provided by Patient Groups and the forum provides an excellent start for groups like these. Several individuals have already shared their stories and re-assured people with information about where they have been treated or what treatments have worked for them – sure, BHD Syndrome is rare, but that doesnt mean BHD patients should remain isolated.