Asked by: Mike Penning (Conservative - Hemel Hempstead)
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.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
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.
Asked by: Mike Penning (Conservative - Hemel Hempstead)
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 support International fibrodysplasia ossificans progressiva (FOP) Awareness Day on 23 April; and if he will make a statement.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The Department has no specific plans for Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day. However, we work closely with Genetic Alliance UK, of which FOP FRIENDS is a member and will participate in events around Rare Disease Day on 28 February 2022.
Asked by: Mike Penning (Conservative - Hemel Hempstead)
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 increase awareness of fibrodysplasia ossificans progressiva (FOP) among healthcare professionals (a) in general and (b) in relation to new-born screening.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The Government published the United Kingdom Rare Diseases Framework in January, to improve the lives of those living with rare diseases, such as Fibrodysplasia ossificans progressiva (FOP), including increasing awareness of rare diseases among healthcare professionals. This will be followed by action plans from each nation of the UK to implement the Framework. As part of the development of England’s action plan, the Department is working with Health Education England and NHS England and NHS Improvement to raise awareness of rare diseases, through the development of integrated point of care resources for clinical staff and targeted education modules for trainee healthcare professionals, aligned to the NHS National Genomics Test Directory.
Asked by: Mike Penning (Conservative - Hemel Hempstead)
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 innovative research into (a) slowing the symptoms of, and (b) finding a cure for fibrodysplasia ossificans progressiva.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
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.
Asked by: Mike Penning (Conservative - Hemel Hempstead)
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.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
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.
Asked by: Mike Penning (Conservative - Hemel Hempstead)
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 patient outcomes for people with fibrodysplasia ossificans progressiva.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The United Kingdom Rare Diseases Framework outlines key priorities to improve the lives of those living with rare diseases, such as Fibrodysplasia ossificans progressiva (FOP). These include faster diagnosis, increasing awareness of rare diseases among healthcare professionals, better coordination of care, improving access to specialist care, treatment and drugs and pioneering research. Each of the four UK nations will publish action plans outlining how these priorities will be addressed to improve patient outcomes within two years.
Children with FOP are cared for in the National Health Service by paediatric rheumatologists and/or geneticists with input from other clinicians as required. In the past five years, the Department has provided funding to support eight studies into FOP through the National Institute for Health Research. The National Institute for Health and Care Excellence is also developing highly specialised technologies guidance on ‘Palovarotene for preventing heterotopic ossification associated with fibrodysplasia ossificans progressiva’.
Asked by: Mike Penning (Conservative - Hemel Hempstead)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what practical support his Department provides to help improve the lives of people with fibrodysplasia ossificans progressiva.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The United Kingdom Rare Diseases Framework outlines key priorities to improve the lives of those living with rare diseases, such as Fibrodysplasia ossificans progressiva (FOP). These include faster diagnosis, increasing awareness of rare diseases among healthcare professionals, better coordination of care, improving access to specialist care, treatment and drugs and pioneering research. Each of the four UK nations will publish action plans outlining how these priorities will be addressed to improve patient outcomes within two years.
Children with FOP are cared for in the National Health Service by paediatric rheumatologists and/or geneticists with input from other clinicians as required. In the past five years, the Department has provided funding to support eight studies into FOP through the National Institute for Health Research. The National Institute for Health and Care Excellence is also developing highly specialised technologies guidance on ‘Palovarotene for preventing heterotopic ossification associated with fibrodysplasia ossificans progressiva’.
Asked by: Mike Penning (Conservative - Hemel Hempstead)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what (a) funding and (b) other support his Department provides to help improve the lives of people with fibrodysplasia ossificans progressiva.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The United Kingdom Rare Diseases Framework outlines key priorities to improve the lives of those living with rare diseases, such as Fibrodysplasia ossificans progressiva (FOP). These include faster diagnosis, increasing awareness of rare diseases among healthcare professionals, better coordination of care, improving access to specialist care, treatment and drugs and pioneering research. Each of the four UK nations will publish action plans outlining how these priorities will be addressed to improve patient outcomes within two years.
Children with FOP are cared for in the National Health Service by paediatric rheumatologists and/or geneticists with input from other clinicians as required. In the past five years, the Department has provided funding to support eight studies into FOP through the National Institute for Health Research. The National Institute for Health and Care Excellence is also developing highly specialised technologies guidance on ‘Palovarotene for preventing heterotopic ossification associated with fibrodysplasia ossificans progressiva’.
Asked by: Mike Penning (Conservative - Hemel Hempstead)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what level of funding his Department is providing for research into (a) slowing the symptoms of and (b) finding a cure for fibrodysplasia ossificans progressiva.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The Department funds research into rare diseases such as Fibrodysplasia ossificans progressiva (FOP) via the National Institute for Health Research (NIHR). In the past five years, the Department has provided funding to support eight studies into FOP through the NIHR. Within the NIHR, for all disease areas, the amount of funding depends on the volume and quality of scientific activity and the usual practice is not to ring-fence funds for expenditure on particular topics.
The United Kingdom Rare Diseases Framework, published in January 2021, outlined a vision for improving the lives of those living with rare diseases, such as FOP. Further details on research into rare diseases will be provided in action plans, which will be published by each of the four UK nations within two years.
Asked by: Mike Penning (Conservative - Hemel Hempstead)
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 increase research into (a) slowing the symptoms of and (b) finding a cure for fibrodysplasia ossificans progressiva.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The Department funds research into rare diseases such as Fibrodysplasia ossificans progressiva (FOP) via the National Institute for Health Research (NIHR). In the past five years, the Department has provided funding to support eight studies into FOP through the NIHR. Within the NIHR, for all disease areas, the amount of funding depends on the volume and quality of scientific activity and the usual practice is not to ring-fence funds for expenditure on particular topics.
The United Kingdom Rare Diseases Framework, published in January 2021, outlined a vision for improving the lives of those living with rare diseases, such as FOP. Further details on research into rare diseases will be provided in action plans, which will be published by each of the four UK nations within two years.