Westminster Health Forum

We are continuing to organise full-scale virtual conferences which retain all the features of physical seminars, including full programmes, presentations with slides, panel discussions and live delegate questions and comments sessions, person-to-person and group networking, and a permanent record provided to all delegates afterwards. New events are coming on to our conference programme all the time, so there are plenty of opportunities to join us if you haven’t already, from wherever you are.
For booking-related queries or information on speaking please email us at info@forumsupport.co.uk, or call +44 (0)1344 864796.

If you’re already booked on, joining instructions can be accessed from five working days before your conference via the booking dashboard. Need help? You can contact our Delegate Relations team at delegate.relations@forumsupport.co.uk or by calling the above number.

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

January 2020

Price: £95 PLUS VAT

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.

This pack includes

  • Dropbox video recording of the conference
  • PDF transcript of the discussion, including all speaker remarks and Q&A
  • PDFs of speakers' slide material (subject to permission)
  • PDFs of the delegate pack, including speaker biographies and attendee list
  • PDFs of delegate articles