Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to improve international collaboration on research into (a) slowing the symptoms of and (b) finding a cure for fibrodysplasia ossificans progressiva.
We published the United Kingdom Rare Diseases Framework in January 2021, outlining a national vision for improving the lives of those living with rare diseases, such as Fibrodysplasia ossificans progressiva (FOP). Due to the small numbers of patients with individual rare diseases, international collaboration is essential to support research and patient care, particularly for very rare diseases. Further details regarding rare diseases research and international collaboration under the Framework will be provided in action plans which will be published by each of the four UK nations within two years.