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The Manchester Rare Disease Showcase
8th October, 2019 at 10:00 am - 5:00 pm
Our Rare Disease Showcases are a celebration of innovative rare disease projects across the UK. As a world leader in rare research, exceptional examples of rare disease practice can be found all over the country. Our touring event series heads to local regions to give them the attention they deserve.
Join Findacure for The Manchester Rare Disease Showcase – a day-long conference celebrating rare disease developments in Manchester and North West England.
The event will take place on Tuesday 8th October at Bridgewater Hall, Manchester, and attendees can expect:
- Presentations from rare experts in Manchester’s local area, including patients, support groups, clinicians and researchers.
- Highlights of excellent progress in academic, healthcare, industry and patient advocacy
- Two lightning talk sessions for delegates to propose and share their own rare stories
- Ample patient group and charity exhibitors from across the UK
- Dedicated time to network with North West England’s rare community
10:00 Welcome from Findacure
10:15 How our rare diseases initiative is progressing at Manchester University NHS Foundation Trust (MFT)
– Stephanie Yau, Rare Diseases Project Manager, MFT
10:30 Growing new human kidneys to understand rare diseases
– Prof. Adrian Woolf, Chair in Paediatric Science, Manchester University
11:00 The power of patients, partnerships and AI in accelerating rare treatment development
– Bruce Bloom, Chief Collaboration Officer, Healx
11:15 Tea break
11:45 EAP: delivering lifesaving treatments through early access programs
– Naomi Litchfield, Patient Advocacy Manager & Graham Sidorowicz, VP Business Development, Bionical
12:15 Lightning talk session one
14:15 Developing inclusive services for the UK’s multi-ethnic rare community
– Asya Choudry, Community Engagement Manager, Breaking Down Barriers
14:45 Lightning talk session two
15:15 Tea break
15:45 Interferon driven disorders; diagnosis, natural history, treatment, and the patient voice
– Dr Tracy Briggs, Senior Clinical Lecturer & Naz Khan, Principle Genetic Counsellor, Manchester Centre for Genomic Medicine
16:15 Living with a rare disease: a patient’s perspective
– Sally Hatton, Young Person’s Project Office, Metabolic Support UK
16:45 Closing remarks
17:00 End of showcase
We are delighted to be able to offer a number of exhibition stands to patient organisations and charities completely free of charge. If you are interested in exhibiting, please complete an application form.
Manchester University NHS Foundation Trust
Greater Manchester NIHR CRN
Stiff Person Syndrome
Metabolic Support UK
Over the Wall Children’s Charity
Ataxia & Me
Fibrous Dysplasia Support UK
National Aspergillosis Centre
Rett Disorders Alliance UK
Breaking Down Barriers
Niemann Pick UK
Same But Different
Yellow Brick Road Project
With thanks to our sponsors
We would like to thank our sponsors for providing financial support for this event. This event has been solely organised by Findacure and our sponsors have not determined the content or organisation. All funds received by pharmaceutical companies have been used in accordance with the ABPI code.