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.

Other renal cancer sites:

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


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.
  • 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.


Other sites of interest:

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