The Cardiff Rare Disease Showcase

by | Mar 17, 2017

Findacure is pleased to announce The Cardiff Rare Disease Showcase!

Given the barriers that rare disease patients often face in getting the support and treatments they need, we believe that collaboration between all stakeholders is the only way the rare disease community can progress and meet its goals. To this end, we are holding our next Rare Disease Showcase event at the Life Sciences Hub in Cardiff, Wales on Thursday 4th May.

Our networking event will include cases studies from the ED Society and Tuberous Sclerosis researchers, alongside a selection of five minute lightning talks, proposed by delegates. The evening will be supplemented by canapés and refreshments to create an informal atmosphere and promote open conversation.

If you have any questions about the event, please email Mary Rose Roberts at

Tickets are available now on Eventbrite.

Registration is free for patients, patient groups and charities.


  • 18:00 Registration
  • 18:30 Welcome and introduction to Findacure
    Dr Rick Thompson, Head of Research, Findacure
    From this point onwards, canapés and refreshments will be served. 
    The event will consist of open networking accompanied by four delegate proposed lightning talks, each lasting five minutes, and two fifteen minute long invited case studies.
  • 19:00 The IMAGINE-ID study: parents as partners in research
    Dr Samuel Chawner, Research Associate, Cardiff University
  • 19:20 Case Study: Ectodermal Dysplasia Society
    Diana Perry, Chief Executive, ED Society
  • 19:50 Partnering for impact: charities helping charities
    Dr Madhu Madhusudhan, Senior Business Manager, MRC Technology
  • 19:55 I have a rare disease and I am crossing borders
    Alan Thomas, Founder, Atacsia a Fi – Ataxia & Me
  • 20:15 Case Study: Tuberous Sclerosis researchers
    Julian Sampson, Director, Division of Cancer & Genetics, Cardiff University
  • 20:45 NETs: a not so rare cancer?
    Nicola Jervis, Patient Support Manager, NET Patient Foundation
  • 21:00 Close