Westminster Health Forum policy conference : Rare diseases and specialised commissioning in England - genomics, research and access to medicine


Thursday 09 January 2020

This seminar will consider the priorities for rare disease outcomes and specialised commissioning in England - looking at utilising genomics, priorities for research and improving access to medicines.

The agenda includes keynote contributions from: Professor Dame Sue Hill, Chief Scientific Officer, NHS England; Dr Richard Scott, Clinical Lead, Rare Diseases, Genomics England; Helen Knight, Programme Director, Technology Appraisals and Highly Specialised Technologies, NICE; Dr Jayne Spink, Chief Executive, Genetic Alliance UK and Richard Eaton, Rare Conditions Franchise Lead, Roche.

It also includes case study contributions from:

  • Dr Anneke Seller, Health Education England - on increasing genomics training among healthcare professionals and its impact on delivering services for rare diseases; and
  • Dr Larissa Kerecuk, Birmingham Women’s and Children’s NHS Foundation Trust - on her experience developing the UK’s first Paediatric Rare Disease Centre and supporting research into rare diseases.

The agenda in summary

  • Rare diseases policy in England and implementing the National Genomic Healthcare Strategy;
  • Implementation of the UK Strategy for Rare Diseases and key issues for patients;
  • Specialised services for rare diseases: workforce and training, patient engagement and co-ordinating care;
  • Rare disease research: investment, collaboration and innovation;
  • Utilising genomics and personalised medicine in diagnosis and treatment;
  • Improving access to medicines for rare diseases;
  • The role of NICE in improving treatment for rare diseases: cost effectiveness, value and evaluation; and
  • Specialised commissioning: funding, integration and reducing variation.

Click here for full details.




Contact Us

University of Liverpool

Block A: Waterhouse Buildings

1-5 Brownlow Street

Liverpool L69 3GL

Email: cjmcn@liverpool.ac.uk

Follow us