Latest News

10th INoPSU Scientific Conference, Glasgow, Scotland17-Jul-2018

The International Network of Paediatric Surveillance Units (INoPSU) held its 10th.. read more

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.

Genetic Alliance Australia 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.

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) is a United States of America support group for those with rare disease.

Genetic and Rare Diseases Information Center (GARD) provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.