Today is national Rare Disease Day – a global awareness-raising campaign that shines a spotlight on those who are living with rare conditions.
Health Education England has published an article providing information regarding those living with a rare disease and the importance of education in the health care industry. If you are interested in learning more, click here.
To improve the lives of people living with rare disease in the UK, the UK government has published its 2024 UK Action Plan for Rare Disease. The plan outlines key actions to:
- Help patients get a final diagnosis faster
- Increase awareness of rare diseases among healthcare professionals
- Provide better coordination of care
- Improve access to specialist care, treatment and drugs
As a network, we recognise that patient voice and collaboration is crucial to ensure that the changes and actions implemented are tailored to patient needs and are sustainable. We will continue to work with our colleagues across England to drive change, raise awareness and support these national aims.
We will be hosting our first Rare Inherited Anaemia patient event on Saturday 23rd March. If you are a patient or carer of someone living with a rare inherited anaemia (excluding sickle cell and thalassaemia) and wish to attend, click here to register.
