For Families

The For Families section of the website provides information about BHD syndrome, resources for living with BHD syndrome, and community interaction.


What is BHD

Provides an introduction to BHD syndrome, as well as details of other hereditary kidney cancer syndromes.



Describes the symptoms of BHD syndrome in the skin, lungs and kidneys as well as other possible symptoms.


Diagnosis and Treatment

Information about when to suspect BHD syndrome (Do I have BHD?) and Genetic Testing for BHD syndrome, as well as details about current treatment options for skin, lung and kidney symptoms and links for current clinical trials.


Information Pamphlets

Pamphlets offering brief overviews of the diagnosis, symptoms and treatment options for BHD. These can be printed and shared with your family, friends and doctor.


Additional Resources

Offers a range of advice, tools and considerations for managing a BHD diagnosis, such as things to think about before seeing a genetic counsellor, resources for possible insurance and discrimination issues and more.


Also of interest:


Where anyone can share experiences, post thoughts, ask questions and answer queries.


Written Interviews

A section where we feature interviews with BHD patients and researchers.


Personal stories

BHD patients offer a snapshot of how BHD has affected their lives and families.



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