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Rare Disease Meeting 2018 - Glasgow

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Location

Queen Elizabeth University Hospital

Teaching & Learning Centre

Govan Road

Glasgow

G51 4TF

United Kingdom

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Description

The second Rare Disease Day event to be held in Glasgow, helping to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Part of International Rare Disease Day (https://www.rarediseaseday.org/).

The event will be held at the Teaching & Learning Centre at the Queen Elizabeth University Hospital, Govan Road, Glasgow, on Friday 4th May. 10am-4pm, lunch, tea & coffee provided.

Programme

10:00 - A history of clinical trials and good clinical practice. Naomi Hickey, Glasgow Clinical Research Facility

10:30 - The challenges of clinical trials for rare diseases. Jurgen Van-Melckebeke, Senior Project Manager, Glasgow Clinical Research Facility

11:00 - Gene therapy to treat rare diseases – a one-time treatment? Ralph Hector, Research Fellow, University of Edinburgh

11:30 - Multi-centre international trials in rare epilepsies: experience from cannabinoids and fenfluramine. Sameer Zuberi, Consultant Paediatric Neurologist, Royal Hospital for Children

12:00 - Lunch / coffee / stands in the atrium

13:30 - Ataxia-telangiectasia and the ATTEST trial. Mohnish Suri, Consultant Clinical Geneticist, Nottingham University Hospital

14:00 - Drug repurposing to treat rare diseases. Rick Thompson, Findacure

14:30 - A clinical trial for Rett syndrome: a family perspective. Rachael Bloom, Reverse Rett

15:00 - Testing treatments for Fragile X syndrome: lessons learned. Andrew Stanfield, Senior Clinical Research Fellow, University of Edinburgh

15:30 - A new genetic cause every week? When to be sceptical about the rare disease literature. Joe Symonds, Research Fellow, Royal Hospital for Children

16:00 - Close

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Date and Time

Location

Queen Elizabeth University Hospital

Teaching & Learning Centre

Govan Road

Glasgow

G51 4TF

United Kingdom

View Map

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