The UK Rare Diseases Framework identified that there is a great and urgent need for education in rare disease generally, and also in genomics. Our short film, produced in collaboration with ITN Productions Industry News as part of a programme with Genetic Alliance UK, explores some of those reasons.
As an educational programme tasked with delivering genomics education, training and experience for the healthcare workforce, the Health Education England’s Genomics Education Programme (GEP) has a role in tackling priority areas 1 and 2 of the framework:
- Helping patients get a final diagnosis faster.
- Increasing awareness of rare diseases among healthcare professionals.
The GEP’s activity in this area falls into three main categories:
- Scoping workforce needs and informing NHS workforce planning.
- Developing, and collaborating to inform, genomics education and training (including curricula).
- Working with various networks and decision makers to influence policy and educational delivery.
The programme collaborates with a variety of professional and patient groups to develop educational interventions, for example (this list is not exhaustive):
- 100,000 Genomes Project Participant Panel
- Academy of Medical Royal Colleges and individual royal colleges
- Charities that work closely with patient representatives, including Medics 4 Rare Disease and Genetic Alliance UK.
- England Rare Diseases Framework Delivery Group
- NHS England and NHS Improvement-funded transformation projects
- NHS Genomic Medicine Service Alliances and Genomic Laboratory Hubs
- NHS Workforce Planning
- Nursing and Midwifery Council
- Royal Pharmaceutical Society
- Sickle cell and beta-thalassemia patient group