Events

Rare Disease Patient Network Launch

Same but Different have been invited to exhibit some of the images from the Rare Project at this event and Ceridwen Hughes has been invited to speak.  You can find a full outline of the day and speakers below.  If you would like to attend please click on the following link. https://www.eventbrite.com/e/rare-disease-patient-network-launch-tickets-18627407076?mc_cid=7f348e986d&mc_eid=7dd6d7b2d5

The rare disease network has been formed to engage patients, families and patient organisation representatives in the work that Rare Disease UK is undertaking in Wales, in particular to support the implementation of the Welsh Rare Disease Plan that was published earlier this year. 

Within the day, they will be covering topics such as an introduction to clinical trials, new sequencing technologies and what they mean for patients with rare conditions and also hearing from patients and carers about their experiences of living with rare conditions.

Draft Programme

09.30– 10.00 Registration/ Tea & Coffee

10.00 – 10.10Welcome & Introduction
                        Emma Hughes, Development Officer for Wales
                        Genetic Alliance UK

10.10 – 10.30Engagement opportunities with Rare Disease UK
                        Farhana Ali, Public Affairs Manager
                        Rare Disease UK

10.30 – 10.50 The Welsh Implementation Plan for Rare Disease
                       
Chris Dawson, Policy Strategist
                        Welsh Government

10.50 – 11.20 Coffee Break & Networking

11.20 – 11.50 Genetic Syndromes and Developmental Delay
                       Professor Chris Oliver,
Director
                       Cerebra

11.50 – 12.10 Next Generation Sequencing and Rare Diseases: the Future
                       Dr Rachel Butler,Head of Laboratory
                       All Wales Medical Genetics Service

12.10 - 12.25Rare Disease Patient Registers and recruitment to clinical trials
                       Dr Cheney Drew, Trial Manager
                       South East Wales Trials Unit, Cardiff University

12.25 - 12.45 Patient and Public Involvement in the Health Technology Appraisal Process
                       Dr Claire Davis, Senior Appraisal Scientist & AWTTC Patient Organisation Lead

12.45 – 13.00 Telling Stories
                        Maggie Kirk,
Professor of Genetics Education
                        University of South Wales

13.00 – 14.00 Lunch & Networking

14.00 - 14.20 Living with a Rare Disease
                       Gillian Thomas, Trustee
                        Myeloma UK

14.00 - 14.15 The Role of Patient Organisations
                       Dr Becky Hardiman, CEO
                       Fragile X Society

14.15 – 14.30 The Rare Project
                       Ceridwen Hughes, Director
                       Same But Different CIC

15.00– 15.30 Conclusion and Networking