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NI Rare Disease Implementation Plan: Focus Workshop

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Grosvenor House

5 Glengall Street

Belfast

BT12 5AD

United Kingdom

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Event description

Description

This Focus Workshop, Chaired by Professor Ian Young, is aimed primarily at Clinicians; and aims to find out:

  • what information/methods of communication are available to, and used by, different groups; and
  • what is missing or could be improved.
This will identify what information is already available to, and used by, doctors and other clinicians; and what is missing or could be improved.
Additionally we want to explore the communication links between Primary Care (e.g. GP’s) and Secondary Care (Hospital Consultants); and then also between Hospital Consultants in various Specialities (and Trusts); and between medical personnel and Allied Health Care Professionals who play a key role in day to day managment of those living with rare diseases.
The Focus Workshop fis divided into two sections: first an “Information Providing” section; followed by a “Discussion” section, facilitated by Grace Henry.
The outline programme is below:

Information
  • Introduction: The Strategic Context- Proffessor Ian Young
  • The role of Genetics, both currently and in the future- Dr Tabib Dabir
  • The role of Metabolics, current and future- Dr Clodagh Loughrey
  • Emerging Findings: Report Back, Fiona McLaughlin, NIRDP Chair
  • Evaluating the Patient Experience: Dr Jane Miller, NI Genomic Medicine Centre
Interactive Facilitated Discussion
  • What sources of information are already available and used by clinicians?
  • What could be improved?
  • How could communications be streamlined and improved?
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Date and Time

Location

Grosvenor House

5 Glengall Street

Belfast

BT12 5AD

United Kingdom

View Map

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