Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will allocate a clinical care team for each person with (a) fibrodysplasia ossificans progressiva and (b) an ultra-rare disease.
The United Kingdom Rare Diseases Framework, published in 2021, outlining the priorities to improve the lives of those living with rare diseases such as Fibrodysplasia ossificans progressiva, including better coordination of care. Further details on how the Framework will address the coordination of care for patients with rare and ultra-rare diseases will be provided in action plans, which will be published by each of the four UK nations within two years. The Department is working with delivery partners, including NHS England and NHS Improvement, to develop an action plan for England.