Related Sites:

• The Myrovlytis Trust aims to promote research into rare genetic disorders, including but not limited to Birt-Hogg-Dubé syndrome, and to advance the education of the public in medical and molecular genetics.
• The European BHD Consortium (EBC) is a network of researchers and clinicians from throughout Europe actively working on Birt-Hogg-Dubé syndrome. They welcome enquiries from researchers anywhere in the world working on BHD syndrome as well as membership enquiries from European researchers actively working on BHD syndrome.
• The Human Genome Variation Society is a great resource that promotes the collection, documentation and free distribution of genomic variation information in a number of genes including Folliculin.
• The Leiden Open Variation Database is an online database of Folliculin mutations. Researchers are encouraged to add novel data.

Web Resources:

• Wikipedia – more information on BHD Syndrome.
• Familial Cancer Syndromes – a comprehensive reference source that contains a chapter dedicated to BHD Syndrome.
• Kidney Cancer Research – a kidney cancer specific online resource.
• Kidney Cancer Association – an online source for information and support for living with Kidney Cancer
• Patient UK – comprehensive health information provided by GPs and nuress to patients during consultations.
• Dermnet NZ – for more information and images of fibrofolliculomas provided by the New Zealand Dermatological Society.
• eMedicine – an excellent medical reference site that requires users to sign up for a free account.
• Cancer.net – an extensive resource covering all types of cancer.

Other Hereditary Kidney Cancer Syndromes:

• Von Hippel Lindau Family Alliance
• Hereditary Leiomyomatosis Renal Cell Carcinoma Family Alliance
• Tuberous Sclerosis Alliance

Sites of Interest:

• Cancer52 -   52% of UK cancer deaths are from the less common cancers. This alliance of UK organisations works together to provide a larger voice for patients with rarer cancers.
• Genetic Alliance UK – a UK specific alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.
• The Rarer Cancers Foundation – a UK specific site thatoffers advice and information to individuals with rare and less common cancers or to their families and friends, providing a ‘bespoke’ service by phone/email/post.