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Bridging Health and Social Care in Rare Diseases: Rare Disease Day Symposium

An opportunity to learn more about rare diseases and rare disease research in the North East.

  • Monday 25th February 2019 10:00 (6 hours)
  • Event
  • Learn

The aims of this event are:

  • To highlight the (often hidden) challenges of rare diseases and the impact on patients and families living with them.
  • To explore why a broad, holistic approach to care, health and wellbeing is required and how this can be enabled.
  • To celebrate the work ongoing in Newcastle University & the Newcastle upon Tyne Hospitals Trust in delivering state of the art Integrated, holistic care for people with rare diseases.

The event is open to patients and carers, clinicians, researchers, students and the general public.

The event is FREE, but due to limited places registration is required. To book your place, click the Register button at the top of the page.


10:00 - Welcome to the Symposium: Rare Diseases and Rare Disease Day video 
Prof Volker Straub
10:10 - Newcastle as a hub of rare disease excellence
Prof Mike Briggs
10:40 - Policies to bridge health and social care in RD: what tools and Recommendations do we have at European and national levels?
Victoria Hedley
11:30 - Coffee break
11:50 - Patient stories: the need to bridge health and social care - what matters to me
12:10 - Delivering multidisciplinary, holistic care for patients with Neuromuscular Diseases: the model of the John Walton Centre
Gail Eglon, Louise Hastings, Jackie McGuigan and Joe Mason
12:30 - Rare diseases across disciplines - representing rare diseases in the arts
Jackie Donachie
12:50 - Buffet lunch - Networking and Information Stands
13:40 - Bridging health and social care in rare liver disease - the model of the CRESTA Clinic
Prof Dave Jones
14:10 - Navigating the diagnostic odyssey in children with neurodisability 
Prof Miranda Splitt
14:30 - Delivering integrated and holistic care for patients with a rare neurological disorder - Neurofibromatosis Type 1
Rachel Beaufort Jones and Rebecca Rennison
15:00 - Multistakeholder Panel debate - what are our strengths in the North East, in providing integrated and holistic care for people with rare diseases? How could we continue to develop our services?
To include a mixture of speakers and patient experts from the programme above.
15:45 - Celebrating ability over disability: a musical performance (TBC)
16:00 - Close

Information stands include:

  • Newcastle NIHR Biomedical Research Centre
  • NIHR Clinical Research Network North East and North Cumbria
  • John Walton Muscular Dystrophy Research Centre
  • MDUK (Muscular Dystrophy UK)
  • St Oswald's Hospice
  • NIHR BioResource Centre Newcastle


  • King's Hall, Armstrong Building
  • Newcastle University
  • Newcastle upon Tyne
  • NE1 8QB

Bridging Health and Social Care in Rare Diseases: Rare Disease Day Symposium Discussion

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