Our events on the consultation for a UK rare disease plan!

To help you respond to the government's consultation on a UK rare disease plan, we held a series of events and webinars and produced a series of supporting documents.

You can download the presentations from each event below:

Wales Event

Dr Annie Procter, Clinical Director of the Institute for Medical Genetics spoke on diagnosis, prevention and screening. You can download the presentation here.

Hayley Cleaver, Chair of Turner Syndrome Support Society spoke on information and support. You can download the presentation here.

Dr Stephen Jolles, Consultant Clinical Immunologist at University Hospital Wales, spoke on planning and delivering coordinated care. You can download the presentation here.

Michelle Matheron, Senior Public Affairs Officer for the Welsh Council for Voluntary Action gave a presentation on how to respond to the consultation. You can download the presentation here.

England Event

Lesley Greene, Vice President of CLIMB spoke on information and support. You can download the presentation here.

Dr Hilary Burton, Director of the PHG Foundation spoke on research. You can download the presentation here.

Becky Purvis, Head of Policy at the Association of Medical Research Charities gave a presentation on how to respond to the consultation. You can download the presentation here.

Northern Ireland Event

Dr Fiona Stewart, Consultant Clinical Geneticist spoke on diagnosis, prevention and screening. You can download the presentation here

Frances Murphy, Northern Ireland Manger at Contact a Family and Alison Wilson, All Ireland Support Officer for the MPS Society spoke on information and support. You can download the presentation here.

Dr Damian Fogarty, Senior Clinical Lecturer at Queens University Belfast spoke on research. You can download the presentation here.

Nick Meade, Policy Analyst at Genetic Alliance UK gave a presentation on how to respond to the consultation. You can download the presentation here.

Scotland Event

Dr Zosia Miedzybrodzka, Reader in Medical Genetics at the University of Aberdeen, spoke on diagnosis, prevention an screening. You can download the presentation here.

Marie McGill, National Lead at the Single Gene Complex Needs Service spoke on commissioning, planning and delivering coordinated care. You can download the presentation here.

Professor David Wield, Director of Innogen at Edinbrugh University spoke on research. You can download the presentation here.

Vicky Crichton, Public Affairs Manager at Cancer Research UK gave a presentation on how to respond to the consultation. You can download the presentation here.

You can find other supporting materials, including recordings of our webinars here.

We are very grateful to the following companies for their support in enabling us to conduct these activities: Actelion, Alexion, Baxter, Bio Marin, CSL Behring, Genzyme, GSK, Nordic, Orphan Europe, Pfizer, Shire and Swedish Orphan.