Links

Contact a Family is the only UK charity providing support and advice to parents whatever the medical condition of their child.

European Organisation for Rare Diseases is an alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.

European Society for Paediatric Research is oriented towards research which may improve child health.

The Institute of Child Health a world class centre for the study and treatment of childhood disease.

Health on the Net offers a search facility for health information.

The Isabel Medical Charity (ISABEL) is a clinical decision support system covering the spectrum of paediatrics. Its main feature is a differential diagnostic tool but it also includes treatment guidelines in an algorithmic format, an image library and an experience section. These features are linked so that each one enhances the other. The use of ISABEL is free at the point of care.

National Organization for Rare Disease (NORD) - US support group for those with rare disease.

Organising Medical Networked Information (OMNI) offers free access to a searchable catalogue of hand-selected and evaluated, quality Internet resources in Health and Medicine.

ORPHANET is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge.

Office for Rare Disease (ORD) - US government sponsored site. Provides information about ORD-sponsored biomedical research, scientific conferences, rare and genetic diseases in English and Spanish (Genetic and Rare Diseases Information Center), and a portal to information on major topics of interest in the rare diseases community.

Adding new links

If you would like to make a suggestion for additions to our link page please email as at bpsu@rcpch.ac.uk.