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9th INoPSU Scientific and Executive Committee Meeting, Vancouver, Canada14-Oct-2016

On August 16, 2016 INoPSU held its 9th Scientific and Executive Committee meeting at .. read more

BPSU 30 Year Anniversary! 05-Jun-2015

Congratulations to the BPSU on their 30th Anniversary For more on this story please cl.. read more

Launch of INOPSU 15 Year Report24-Aug-2013

The report "15 Years of International Research into Rare Childhood Diseases" will b.. read more


Resources are listed by region. If you would like to make a suggestion for adding a link to this page please email us at


Rare Voices Australia (RVA) is a unified voice for all Australians living with a rare disease.

Association of Genetic Support of Australasia (AGSA) is a organisation that facilitates support for those affected directly or indirectly by genetic conditions / rare diseases throughout Australasia.


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.

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


UCL Great Ormond Street 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.

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.

United States

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

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.