Westminster Health Forum

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

TO BE PUBLISHED January 2020


This conference 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 progress in 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; Dr Ayesha Ali, Consultant, Public Health Medicine and Specialised Commissioning, NHS 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;
  • Access to medicines for rare diseases;
  • Research priorities - investment, collaboration, and innovation;
  • Specialised commissioning - funding, integration, and reducing variation; and
  • Service delivery - workforce and training, patient engagement and co-ordinating care.

Engagement with policy officials at this seminar


Westminster Health Forum conferences typically attract strong interest from policymakers. This seminar will be an opportunity for stakeholders to engage with officials who have reserved places representing: DHSC; BEIS and the Office for Life Sciences; the MHRA; DIT; and the Government Legal Department.



Price: £95 PLUS VAT
Format: DOWNLOADABLE PDF


Shortly after every Westminster Health Forum seminar, a briefing document is produced. This is distributed to all delegates on the day as well as to our policymaker contacts in government, and to stakeholders more widely.

A seminar publication provides a timely record of proceedings, and acts as a guide to the latest thinking on current policy issues for those unable to be at the event.

This publication includes

Presentations

Contributions from keynotes and panellists, including accompanying slides*
*Subject to approval


Delegate Pack

Information from the day, including delegate list, biographies and agenda

Q&A

Transcript of questions and comments posed to speakers from attending delegates


Articles

Supplementary articles from speakers
and delegates