Communication and Information Review: Have your say, and make the NI Rare Disease Plan work!

Northern Ireland Rare Diseases Implementation Plan

As part of the Plan we are working with the Department of Health and the HSC bodies to carry out a Communications and Information Review; and on the basis of the evidence gathered, to make and implement recommendations for improvements to current systems.

The Review will provide both face to face and online/paper opportunities to participate; so please make full use of all the opportunities there are- your knowledge and experience is needed to build a better system!

We are starting by holding a series of interactive Workshops (see dates/times/venues below) facilitated by Grace Henry, designed to find out:

  • what information you need to help you tackle the challenges of a rare disease- whether you are a person living with a rare disease, a carer, a health professional, or a policy maker or service manager;
  • how that information should be made available; and
  • how you would like to participate in designing, delivering and evaluating services for rare diseases

These Workshops will give you an opportunity to hear about what is happening on the NI Rare Disease Plan (including on the NI Genomic Medicine Centre; the NI Rare Disease Registry; and medical education) and to have your say  in shaping how you will be included and involved in planning, decision making, and evaluating services.  It’s your chance to describe the information that is available, and how you get it; what is missing;   and to define the information and support you need- and how it should be delivered.

Workshop Outline Agenda:

  • What are Rare Diseases? Consultant in Genetics, Regional Medical Genetics Service
  • The Rare Disease Plan and the HSC: Department of Health Official, Secondary Care Directorate
  • What information is there/What do you need/How should it be delivered: Questionnaire and Facilitated Discussion Groups; Grace Henry

Workshops

  • 16 March 15.00 to 17.00 Conference Room, Portadown Health and Care Centre, Tavanagh Avenue, Portadown BT62 3BU
    Eventbrite - Communications Workshop 2 Have Your Say: Make the Rare Disease Plan work!
  • 22 March 16.00 to 19.00 Larkin Room. Post Graduate Medical Centre, Belfast City Hospital, Lisburn Road, Belfast BT9 7AB
    Eventbrite - Communications Workshop 3 Have Your Say: Make the Rare Disease Plan work!
  • 27 March 12.30 to 14.30 Mulberry Suite, Corrs Corner Hotel, 315 Ballyclare Rd, Newtownabbey, BT36 4TQ
    Eventbrite - Communications Workshop 4  Have your say: Make the Rare Diseases Plan Work!
  • 4 April 15.00 to 17.00 Boardroom, South West Acute Hospital, 124 Irvinestown Rd, Enniskillen BT74 6DN
    Eventbrite - Communications Workshop 5 Have Your Say: Make the Rare Disease Plan Work!

Online Survey

Please comment on Facebook or through Twitter – we are planning a Tweetchat soon; but it would be good to meet up face to face, and share views, ideas and experiences!

Connecting  Advocating  Educating and Innovating

Stronger Together

This entry was posted in Consultations, Rare Disease Implementation Plan. Bookmark the permalink.

Leave a Reply