BHD-specific sites:

• The Myrovlytis Trust – a charity which 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 – a network of researchers and clinicians throughout Europe actively working on Birt-Hogg-Dubé syndrome. They welcome enquiries from researchers anywhere in the world working on BHD syndrome, and they also welcome membership enquiries from European researchers actively working on BHD syndrome.

• The Folliculin Sequence Variation Database – hosted by the Leiden Open Variation Database (LOVD), this database consolidates all identified FLCN mutations. Researchers are encouraged to add novel data. 

• www.skingenedatabase.com – a second Folliculin mutation database.

• The Cancer in our Genes International Patient (CGIP) Databank – created and managed by the VHL alliance to increase knowledge of the natural history of BHD and other inherited kidney cancers.

Other renal cancer sites:

• Kidney Cancer Resource – a kidney cancer specific online resource.

• Kidney Cancer Association – an online source for information and support for living with kidney cancer.

• Action To Cure Cancer – established in 2003 by kidney cancer patients and their families/caregivers. ACKC raises awareness of kidney cancer and ensures that kidney cancer research receives the funding required to identify and develop effective treatments and to find a cure for the disease.

• Kidney Cancer Canada – a charitable, patient-led support organisation established to improve the quality of life for patients and their families living with kidney cancer.

• Cancer.net – an extensive resource covering all types of cancer

• American Cancer Society – an education and awareness resource covering all types of cancer including renal cancers

• Nation Kidney and Urologic Diseases Information Clearinghouse – information about diseases of the kidneys and urologic system. 

 

Rare disease organisations:

• RareShare – an interactive forum for those affected by rare diseases.

• Rare Disease Europe – an alliance of patient organisations representing more than 434 rare diseases patient organisations in over 43 countries.

• National Organisation for Rare Disorders – a US federation of health organisations dedicated to helping people with rare diseases.

• NIH Office of Rare Diseases Research – rare disease information and research.

• The Rarer Cancers Foundation – a UK-specific site that offers advice and information to individuals with rare and less common cancers, or to their families and friends, providing a ‘bespoke’ service by telephone, email and post.

• Cancer52 – 52% of UK cancer deaths are from less common cancers. This alliance of UK organisations works together to provide a larger voice for patients with rarer cancers.

• Rare Disease UK – a national alliance for people with rare diseases and all who support them.

• Canadian Organisation for Rare Disorders – a national network for organisation representing those affected by rare disorders.

• New Zealand Organisation for Rare Disorders – a central point for information about rare disorders.

 

Other sites of interest:

• eMedicine – an excellent medical reference site that requires users to sign up for a free account.

• The Human Genome Variation Society – a great resource that promotes the collection, documentation and free distribution of genomic variation information in a number of genes, including Folliculin.

• Genetic Alliance – a non-profit health organisation which includes more than 1,000 disease-specific advocacy organisations, as well as thousands of universities, private companies, government agencies, and public policy organisations.

• 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.

• Patient UK – comprehensive health information provided by GPs and nurses to patients during consultations.

• Dermnet NZ – more information and images of fibrofolliculomas provided by the New Zealand Dermatological Society.