Loading Events

« All Events

  • This event has passed.


September 23 2019 @ 9:30 AM - 6:30 PM


RARESUMMIT19 is a 1 day summit focusing on patient-centricity in Rare Disease progress


The aims of RAREsummit19

  • to highlight exemplars of patient involvement
  • to provide a toolkit of practical strategies to help educate, inspire and empower all rare disease stakeholders
  • to give stakeholders the knowledge and skills to ensure their practices involve patients and their advocates as essential partners
  • to improve the lives of rare disease patients, together, with greater  efficiency, collaboration and success


Why attend?

  • hold crucial discussions with potential partners from local and global arenas
  • take part in cross-sector activities
  • learn something new, be inspired,  take away practical strategies and fresh ideas, add value, collaborate
  • build your network with 300 biotechnology, pharma and startup leaders, patients and patient group CEOs, healthcare professionals, policy-makers, CROs, researchers and students assembled
  • hear from and put questions to key opinion leaders and vote and share your views  through Q+A and event technology
  • take part in cross-sector activities


More details can be found on the Cambridge Rare Disease Network event webpage.


September 23 2019
9:30 AM - 6:30 PM
Event Category:
Event Tags:
, , , ,
With any Whole Genome Sequencing (WGS) test ordered, a Record of Discussion (RoD) form will also need to be submitted. This document is to record the patient’s consent for genomic testing and their choice on taking part in research. Guidance on the patient choice conversation can be found here
This RoD form will be available for clinicians to download from this webpage. Once completed with the patient, it can be send to the lab with the corresponding test order form and sample.
Tests available to order will be listed in the National Genomic Test Directory. A test order form will soon be made available for clinicians on this webpage to download and complete. This form will include the address of the laboratory that the appropriate sample and completed form needs to be sent to.
Until the new Genomic Laboratory Service goes live, please continue to follow existing test order processes.
Later this year, the online test ordering tool for Whole Genome Sequencing will be integrated into the National Genomics Informatics System (NGIS) and clinicians will be able to search or filter to find a clinical indication, confirm eligibility criteria and start the test request process for their patient.