Rare Diseases Epidemiology - Book

In mid-2017 John Forman, vice-President of ISMRD, was invited by the editors of Rare Disease Epidemiology - 2nd edition to write a preface giving a family perspective to prevalence, clinical care and research on rare diseases.

This invitation was extended to him because of his role as past-President of ICORD, the International Collaboration on Rare Diseases and Orphan Drugs. John has focused the preface on the work that Jenny Noble has done over the last 30 years, because he thinks it is a stand-out example of people making a difference simply by doing what they can, and by sticking to the task.

In writing this John hopes that it will provide recognition of the great work Jenny has done, and provide inspiration to others to do what they can to, contribute to better support, care and research into the rare disease that affects their family.

The PDF file of the preface can be found here.

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