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The Manchester Rare Disease Showcase

8th October at 10:00 am - 5:00 pm

[image description: a woman stands laughing amongst a crowd of people]

The Manchester Rare Disease Showcase

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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

Programme

09:30   Registration

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 

12:40   Lunch

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

Download the programme here  

Exhibition opportunities

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

Confirmed exhibitors:

AKU Society
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CDH UK
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Manchester University NHS Foundation Trust

Greater Manchester NIHR CRN

Stiff Person Syndrome

Annabelle’s Challenge
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Costello Kids
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Metabolic Support UK
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Over the Wall Children’s Charity

TREAT-NMD

Ataxia & Me
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Fibrous Dysplasia Support UK

National Aspergillosis Centre

Rett Disorders Alliance UK
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Vision DMD

Breaking Down Barriers
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Findacure
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Niemann Pick UK
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Same But Different
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Yellow Brick Road Project

If you are interested in corporate exhibition opportunities, please contact our Events Manager, Mary Rose, on maryrose@findacure.org.uk. 

With thanks to our sponsors

Platinum

[Image description: Bionical Emas logo]

Gold

[Image description: Logo for Healx]

Silver

[Image description: Logo for Sobi. The word ‘sobi’ is written in large grey letters. Underneath it, ‘Pioneer in Rare Diseases’ is written in smaller grey letters’. To the left, there is an icon. It is an orange circle with three white stacked circles overlaying it.]

Bronze

[image description: BioMarin logo]

Supporter

[image description: logo for cambridge healthcare research]

Supporter

[image description: LifeArc logo]

Supporter

[image description: logo of Roche]

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.

Details

Date:
8th October
Time:
10:00 am - 5:00 pm
Event Category:
Website:
https://www.eventbrite.co.uk/e/the-manchester-rare-disease-showcase-tickets-62257825833

Organiser

Mary Rose Roberts
Email:
maryrose@findacure.org.uk.

Venue

Bridgewater Hall
Lower Mosley Street
Manchester, M2 3WS United Kingdom
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