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1245057

registered interest
date	20/10/2020
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Diagnosis
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what plans his Department has to ensure that there is a geographical spread of rare disease diagnosis centres to ensure that patients are able to attain timely and accessible access to accurate diagnosis.
tabling member constituency	Harrow East
tabling member printed	Bob Blackman
uin	106324
answer	answer is ministerial correction date of answer 05/11/2020 answer text <p>The Government is committed to improving the lives of those living with rare conditions and recognises the importance of patients across all areas of the United Kingdom being able to obtain a quick and accurate diagnosis.</p><p>The Government will be publishing a new UK Rare Diseases Framework by the end of 2020 which will outline the high-level direction for rare diseases in the UK. Helping patients across the UK access specialist care and get a final diagnosis faster will be priorities of this Framework, as identified by extensive stakeholder engagement with patients, their families, researchers and clinicians. The policies to deliver these priorities will be set out in future nation-specific action plans and will be supported by the recently published Genome UK Strategy, which outlines the Government’s vision to help people live longer, healthier lives using new genomic and other technologies to diagnose and treat rare disease.</p><p> </p><p> </p><p> </p> answering member constituency Bury St Edmunds answering member printed Jo Churchill question first answered 05/11/2020 13:54:02 answering member 4380 label Biography information for Jo Churchill
tabling member	4005 label Biography information for Bob Blackman

1245058

registered interest
date	20/10/2020
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Advanced Therapy Medicinal Products
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps his Department is undertaking to ensure that the NHS and wider health system is prepared for the adoption of advanced therapy medicinal products for the treatment of rare diseases.
tabling member constituency	Harrow East
tabling member printed	Bob Blackman
uin	106325
answer	answer is ministerial correction date of answer 05/11/2020 answer text <p>The National Health Service is involved in research, development and adoption readiness of Advanced therapy medicinal products (ATMPs) through the Advanced Therapy Treatment Centre network, which is hosted by the Cell and Gene Therapy Catapult and set up through funding from the UK Research and Innovation Industrial Strategy Challenge Fund. ATMPs for the treatment of a range of conditions including rare diseases are appraised for clinical and cost effectiveness by the National Institute for Health and Care Excellence (NICE). The NHS, the Accelerated Access Collaborative and direct commissioning teams work with a range of stakeholders to undertake detailed horizon scanning for ATMPs to ensure the relevant clinical and implementation preparations can be made where treatments are recommended by NICE.</p> answering member constituency Bury St Edmunds answering member printed Jo Churchill question first answered 05/11/2020 13:45:49 answering member 4380 label Biography information for Jo Churchill
tabling member	4005 label Biography information for Bob Blackman

1245059

registered interest
date	20/10/2020
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Medical Treatments
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what plans his Department has to consult with rare disease patient groups throughout the UK to ensure that the proposed Innovative Medicines Fund is able to support access to innovative medicines for rare diseases.
tabling member constituency	Harrow East
tabling member printed	Bob Blackman
uin	106326
answer	answer is ministerial correction date of answer 04/11/2020 answer text <p>Proposals for the Innovative Medicines Fund are in development and we expect NHS England and NHS Improvement and the National Institute for Health and Care Excellence to lead an engagement exercise early next year.</p><p>The engagement exercise will involve the pharmaceutical industry, the National Health Service and associated bodies and patient groups, including those with rare diseases.</p><p> </p> answering member constituency Bury St Edmunds answering member printed Jo Churchill question first answered 04/11/2020 14:41:48 answering member 4380 label Biography information for Jo Churchill
tabling member	4005 label Biography information for Bob Blackman