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Patient support directories

Online directories that contain useful patient-orientated contact information and, in some cases, clinical summaries, relating to a variety of genetic conditions.


Contact-A-Family directory of conditions. Provides contact details and brief clinical summaries.

Genetic alliance UK


Genetics home reference

USA (NCBI)-based website. Use the "Patient Support" link.


Use the "Educational Materials" link.

NORD (National organisation for rare diseases)

Based at Washington DC.


Based in Victoria, Australia.

Unique (Rare Chromosome Disorder Support Group)

Unique provides"a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them." It assists such families and individuals in finding others affected by similar chromosome disorders.

Scottish Muscle Network

Select "Patient and Carers" or "Affiliations & Links" from the menu at the top left of the page.

Cancer Research UK

Particularly useful is the "Patient Information" section.

Breakthrough Breast Cancer

Particularly the "About breast cancer" section.