Westminster Health Forum

Rare diseases and specialised commissioning in England - genomics, research and access to medicine

Morning, Thursday, 9th January 2020

Central London

THIS EVENT IS CPD CERTIFIED



This seminar will consider the priorities for rare disease outcomes and specialised commissioning in England - looking at:


  • Utilising data and genomics,
  • Priorities for research, and
  • Improving access to medicines.

The seminar is bringing together key stakeholders and policy makers to assess the progress of implementing the UK Strategy for Rare Diseases.


Delegates will discuss the way forward for delivering the 51 commitments set out in the initial strategy to improve the care and treatment for people living with rare diseases - as well as the next steps for policy moving forward.


It will also be an opportunity to consider the role of the National Genomic Healthcare Strategy and the impact of genomics on research, diagnosis and patient outcomes.


Speakers


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 insights 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 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;
  • Utilising genomics and personalised medicine in diagnosis and treatment;
  • The role of NICE in improving treatment for rare diseases - cost effectiveness, value and evaluation;
  • Key issues for patients;
  • Access to medicines for rare diseases;
  • Research priorities - investment, collaboration and innovation; and
  • Commissioning - funding, integration and reducing variation.
  • Service delivery - workforce and training, patient engagement and co-ordinating care.


Keynote Speakers

Professor Dame Sue Hill

Chief Scientific Officer, NHS England

Dr Jayne Spink

Chief Executive, Genetic Alliance UK

Dr Richard Scott

Clinical Lead, Rare Diseases, Genomics England

Keynote Speakers

Professor Dame Sue Hill

Chief Scientific Officer, NHS England

Richard Eaton

Rare Conditions Franchise Lead, Roche

Dr Jayne Spink

Chief Executive, Genetic Alliance UK

Dr Richard Scott

Clinical Lead, Rare Diseases, Genomics England

Dr Ayesha Ali

Consultant, Public Health Medicine and Specialised Commissioning, NHS England

Chairs

Alex Sobel MP

Officer, All-Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions

Rt Hon the Baroness Neville-Jones

Vice-Chair, All-Party Parliamentary Group for Rare, Genetic and Undiagnosed Conditions

Speakers

Richard Eaton

Rare Conditions Franchise Lead, Roche

Sara Hunt

Chief Executive Officer, Alex, The Leukodystrophy Charity

Angela McFarlane

Senior Market Development Director, UK and Ireland, IQVIA

Prerana Issar

Chief People Officer, NHS England and NHS Improvement

Dr Larissa Kerecuk

Rare Disease Lead and Consultant Paediatric Nephrologist, Birmingham Women’s and Children’s NHS Foundation Trust and Clinical Research Speciality Lead, Paediatrics, National Institute of Health Research Clinical Research Network West Midlands

Dr Robin Lachmann

Consultant, Metabolic Medicine, University College London Hospitals NHS Foundation Trust

Dr Anneke Seller

Scientific Director, Genomics Education Programme, Health Education England

Helen Knight

Programme Director, Technology Appraisals and Highly Specialised Technologies, NICE