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Category: Survey

Whole Genome Sequencing Survey

  • Posted on Oct 8, 2018

Share your views on Whole Genome Sequencing and the NHS Genomics England has commissioned Genetic Alliance UK to seek the views of patients and carers around the introduction of Whole Genome Sequencing (WGS) into theMore >

RUDY Study

  • Posted on Feb 14, 2018

Rudy is a study in rare diseases of the bones, joints and blood vessels. Headed up by a research team at the University of Oxford, Rudy aims to transform clinical care for participants through patient-drivenMore >

Osteogenesis Imperfecta Foundation (OIF)

  • Posted on Sep 7, 2018

The OIF is the BBS equivalent for the United States of America, and they list studies over on their website. The success of clinical studies of a rare disorder like osteogenesis imperfecta (OI) depend onMore >

Pain Study by Fundación Ahuce

  • Posted on Sep 13, 2018

A STUDY ABOUT PAIN IN OI This study closed in January 2019 – the results should be available by the end of 2019. The Spanish research foundation Fundación Ahuce launched a  research project in collaborationMore >

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