Institute of Genetics & Cancer - Shining a Light on Osteogenesis imperfecta

People living with genetic disorders and their families are at the heart of research at the Institute of Genetics and Cancer at the University of Edinburgh. Join us for this online event to find out about our research on Osteogenesis imperfecta (Brittle Bone Disease). Hear from the Principal Investigator for the TOPaZ Trial, a patient sharing their experiences and insights of living with this rare bone condition and what our research and the TOPaZ Trial means to them and advocates from the Brittle Bone Society and Osteogenesis Imperfecta Federation Europe (OIFE).

ONLINE EVENT PROGRAMME

Tuesday 8 June 2021, 5-6pm

17:00 - 17:05 Welcome from Host

Professor Tim Aitman, Director of the Centre for Genomic and Experimental Medicine, within the Institute of Genetics and Cancer

17:05 - 17:15 “Research update on Osteogenesis imperfecta & the TOPaZ Trial”

Professor Stuart Ralston, Centre for Genomic and Experimental Medicine and Principal Investigator TOPaZ Trial, Institute of Genetics and Cancer

17:15 - 17:25 “Patient Voice – Living with Osteogenesis imperfect”

Mandy Grant has recently joined the TOPaZ trial

17:25 - 17:30 “Shining a light on Osteogenesis Imperfecta”

Patricia Osborne, CEO, Brittle Bone Society

17:30 - 17:35 “Who we are and what we do”

Ingunn Westerheim, President, Osteogenesis Imperfecta Federation Europe (OIFE)

17:35 – 18:00 Panel Discussion – Q&A

Panel: Professor Stuart Ralston, Mandy Grant, Patricia Osborne , Ingunn Westerheim

18:00 Online event closed by Host

Professor Tim Aitman, Director, CGEM, Institute of Genetics and Cancer

ABOUT THE INSTITUTE OF GENETICS AND CANCER

The Institute of Genetics and Cancer is a strategic partnership of the Medical Research Council Human Genetics Unit, the Cancer Research UK Edinburgh Centre and the University of Edinburgh.

The Institute hosts 3 research centres - the MRC Human Genetics Unit, the CRUK Edinburgh Centre and the Centre for Genomic and Experimental Medicine.

Part of the College of Medicine and Veterinary Medicine and based at the Western General Hospital Campus, the Institute carries out world-class genetic, genomic, cellular and clinical science to improve understanding of human development, physiology and disease, and the applications of this knowledge for the benefit of patients and society. To find out more visit https://www.ed.ac.uk/institute-genetics-cancer

ACCESSIBILITY REQUIREMENTS

• We wish to be as accessible to everyone as possible. Please let Dee, the event organiser, know if you have any online event access requirements or if we can make any improvements to this page: publicengagement@igc.ed.ac.uk

• We will be hosting this online event on Zoom, which will be compatible with assistive technology.

• If you would prefer to send questions for this online event in advance, please email these to Dee, publicengagement@igc.ed.ac.uk, including your name and the talk that it relates to. Please be aware that we may not be able to ask our speakers all the questions we receive, but we will endeavour to answer as many as possible.

DESCRIPTION OF THE ONLINE EVENT GRAPHIC DESIGN

• A midnight blue backdrop with a torch, located in the bottom left corner, shining ‘light’ to the top right corner.

• From the top of the torch, a V-shaped cone of light widens towards the top right of the graphic.

• At the top left of the graphic, our new Institute logo - the Institute of Genetics and Cancer, with our funder logos: UKRI Medical Research Council Logo, The University of Edinburgh & Cancer Research UK

• At the top right of the graphic, OIFE and BBS logos

• The online event title is across the upper half of the graphic

• The online event information is to the right of the torch – date & time and names and roles of the 4 presenters

ANY QUERIES OR SUGGESTIONS

Email Dee Davison, Public Engagement Manager: publicengagement@igc.ed.ac.uk

EVENT RECORDING, VIDEO & PHOTOGRAPHY

This online event will be recorded. The event video will be edited and subtitled and then posted on our Institute website (https://www.ed.ac.uk/institute-genetics-cancer/public-events-and-resources/public-events ) at the University of Edinburgh and clips may be used after the online event, on the Institute’s websites, social media channels and photographs may be used on printed materials.

If you do not wish to be photographed/filmed, please contact Dee, publicengagement@igc.ed.ac.uk

PRIVACY STATEMENT

Information about you: how we use it and with whom we share it.

• We will use your personal data to allow us to process your registration, communicate with you and potentially obtain your feedback about the online event. We are processing the information about you for these purposes because by registering for the event, you are entering into a contractual agreement for us to do so.

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• If you wish to attend an event organised by the Institute of Genetics and Cancer but do not wish to use Eventbrite, please email publicengagement@igc.ed.ac.uk

• If you have given us your permission, we will share your name, affiliation and contact details with the other participants in the delegate list. We will not share information about you with any other third party.

• After the event, we may send you a survey as it is our legitimate interest to help us improve any future events we organise.

• We will hold the personal data you provided us for 6 months. If you have agreed to be contacted about future events, we will hold your personal data for as long as you subscribe to these updates. Where provided, financial data such as a payment record will be held for 7 years, but we will ensure that all information that can identify you directly is removed after 6 months.

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• This Privacy Statement is continued at: www.edin.ac/privacy