Westminster Health Forum

Conferences that are scheduled to take place before September will be conducted online.
The format will mirror physical conferences organised by the Forum with speakers presenting via webcam, accompanied by slides if they wish.
The conferences will be chaired and there will be opportunities for delegate questions and comments.
We will be contacting all participants in advance of each conference with full information and guidance on how to take part.
There will be some exceptions where conferences will be postponed, for instance those that would largely involve key stakeholders in the NHS or emergency services.
All participants affected by this will be informed as soon as possible.
If you’d like to speak to us over the phone about any booking-related queries, please call one of the following numbers: +44 (0)7951044809 / +044 (0)7503591880 / +44 (0)7538736244

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

January 2020

This seminar considered 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 brought together key stakeholders and policymakers to assess progress in implementing the UK Strategy for Rare Diseases.

Delegates discussed 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 was also an opportunity to consider the role of the National Genomic Healthcare Strategy and the impact of genomics on research, diagnosis, and patient outcomes.


The agenda included keynote contributions from: Professor Dame Sue Hill, Chief Scientific Officer, NHS England; Dr Richard Scott, Clinical Lead, Rare Diseases, Genomics England; Dr Ayesha Ali, Medical Advisor, Highly Specialised Services, 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 included 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.

Price: £95 PLUS VAT

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


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

Delegate Pack

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


Transcript of questions and comments posed to speakers from attending delegates


Supplementary articles from speakers
and delegates