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HEE launches new resource to help treat rare diseases
28 February 2022
Health Education England is marking Rare Disease Day with the launch of a new online education hub to improve the diagnosis and treatment of rare diseases.
It comes as the government launches the first Rare Diseases Action Plan – devised jointly with HEE and other partners – to improve the prospects for patients with more than 7,000 rare conditions.
The HEE hub, which is aimed at a wide variety of health professionals, features stories from patients and signposts to other useful educational resources. It can be accessed here:-
https://www.genomicseducation.hee.nhs.uk/rare-disease-education-hub/
In addition, a new film has been launched shining a light on rare diseases, explaining advances in diagnosis and treatment and highlighting conditions which can easily be overlooked. You can watch the video here:-
https://www.raredisease.org.uk/rdd2022/light-on-rare/
Professor Kate Tatton-Brown, Clinical Director and Head of the Genomics Education Programme, Health Education England, said: “We are delighted to be launching our rare disease hub and would like to say ‘thank you’ to all our partners who have contributed towards its development.
“We in the GEP are committed to developing excellent education and training to support optimal care for patients and families with rare diseases. We hope that the rare disease hub is one of many steps towards reaching this goal.”
The new government action plan aims to tackle issues faced by those with rare disease and their families. Like the hub, its launch follows months of collaboration between expert clinicians, educationalists, patients and charities as part of the England Rare Diseases Framework Delivery Group and UK Rare Diseases Forum.
It includes commitments on research, including an announcement of £40 million of new funding to the National Institute for Health Research (NIHR) BioResource, to further their work in characterising and understanding rare diseases.
Health and Social Care Secretary Sajid Javid said: “This action plan will speed up diagnoses and care and allow our fantastic workforce to better support patients by drawing upon the UK’s world-leading science and technology.”
More details on the initiative are here:-