Rare, Genetic and Undiagnosed Conditions Alert Sample


Alert Sample

Alert results for: Rare, Genetic and Undiagnosed Conditions

Information between 22nd May 2024 - 1st June 2024

Note: This sample does not contain the most recent 2 weeks of information. Up to date samples can only be viewed by Subscribers.
Click here to view Subscription options.


Parliamentary Debates
Valedictory Debate
114 speeches (57,382 words)
Friday 24th May 2024 - Commons Chamber
Department for Work and Pensions
Mentions:
1: Alok Sharma (Con - Reading West) Serving as a Member of Parliament is a rare privilege, and I will always carry a piece of this place - Link to Speech

Leasehold and Freehold Reform Bill
137 speeches (23,203 words)
Report stage
Friday 24th May 2024 - Lords Chamber

Mentions:
1: Lord Moylan (Con - Life peer) It is rare that something as arcane as property law could excite such passion, but we need less passion - Link to Speech

NHS
65 speeches (9,780 words)
Thursday 23rd May 2024 - Commons Chamber
Department of Health and Social Care
Mentions:
1: Victoria Atkins (Con - Louth and Horncastle) Let the record reflect this rare moment of agreement between the right hon. Gentleman and me. - Link to Speech

Immigration and Asylum
5 speeches (2,950 words)
1st reading
Wednesday 22nd May 2024 - Commons Chamber

Mentions:
1: Alison Thewliss (SNP - Glasgow Central) circumstances, the UNHCR operates a resettlement policy, but it says itself that resettlement is “the rare - Link to Speech

E-scooters: Deaths and Serious Injuries
22 speeches (7,968 words)
Wednesday 22nd May 2024 - Westminster Hall
Department for Transport
Mentions:
1: Sarah Dyke (LD - Somerton and Frome) District Council, we introduced one of the e-scooter trials, which provided rural communities with a rare - Link to Speech

Prison Media Bill
19 speeches (4,286 words)
Committee stage
Wednesday 22nd May 2024 - Public Bill Committees
Ministry of Justice
Mentions:
1: Edward Argar (Con - Charnwood) It is rare that one gets the opportunity to thank one’s private office.Question put and agreed to.Bill - Link to Speech

Holocaust Memorial Bill
133 speeches (27,169 words)
Committee of the whole House
Wednesday 22nd May 2024 - Commons Chamber
Department for Levelling Up, Housing & Communities
Mentions:
1: Nickie Aiken (Con - Cities of London and Westminster) To this day, local schoolchildren and even younger children continue to take advantage of this rare green - Link to Speech

Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders
19 speeches (5,082 words)
Wednesday 22nd May 2024 - Westminster Hall
Department of Health and Social Care
Mentions:
1: Andrew Selous (Con - South West Bedfordshire) Twelve types of EDS are rare and can be genetically tested, but—this is a really important point—there - Link to Speech
2: Andrew Selous (Con - South West Bedfordshire) am very grateful to her for putting that important point on the record.The 13th type of EDS is not rare - Link to Speech
3: Andrew Selous (Con - South West Bedfordshire) First, hEDS is a common type of EDS —it is the most prevalent—and is therefore not covered by the rare - Link to Speech
4: Andrew Stephenson (Con - Pendle) NHS England commissions a national diagnostic service for certain rare types of EDS that can be diagnosed - Link to Speech

Oral Answers to Questions
131 speeches (10,186 words)
Wednesday 22nd May 2024 - Commons Chamber
Cabinet Office
Mentions:
1: Rishi Sunak (Con - Richmond (Yorks)) In the rare number of cases where individuals have not appropriately informed the DWP about a change - Link to Speech



Select Committee Documents
Friday 31st May 2024
Formal Minutes - Formal minutes Session 2022-23 (May 2022 to November 2023)

Foreign Affairs Committee

Found: Critical minerals Guillaume Pitron, Journalist and Author of 'The Rare Metals War' and Henry Sanderson

Wednesday 29th May 2024
Formal Minutes - Formal Minutes 2023-24: List of closed petitions

Petitions Committee

Found: statutory behaviour and discipline policy that applies to all schools 14 Commit to a 'Childhood Rare

Wednesday 29th May 2024
Formal Minutes - Formal Minutes of Session 2023–24

Science, Innovation and Technology Committee

Found: My spouse, Angela Metcalfe, is Chief Executive of Hereditary Angioedema (HAE) UK, a rare disease charity

Wednesday 29th May 2024
Formal Minutes - Formal Minutes: Session 2022-23

Environment, Food and Rural Affairs Committee

Found: Environmental Land Management S chemes: progress update Conservative Animal Welfare Foundation [EPU0001] Rare

Tuesday 28th May 2024
Report - First Report - The work of the Transport Committee in the 2019 Parliament

Transport Committee

Found: change of mindset, so that operators and others act on the basis that failures must be vanishingly rare

Tuesday 28th May 2024
Correspondence - Chair to Secretary of State for Health and Social Care on Future Cancer 23.05.24

Health and Social Care Committee

Found: patients with the least survivable cancers, including in the case of his speciality of glioblastoma, a rare

Tuesday 28th May 2024
Written Evidence - Startup Coalition
AIG0021 - Use of artificial intelligence in government

Public Accounts Committee

Found: are less able to put their innovations in stasis and wait — and are thus more likely to prefer the rare

Tuesday 28th May 2024
Written Evidence - Royal College of Paediatrics and Child Health
LTW0030 - NHS England’s modelling for the Long-Term Workforce Plan

Public Accounts Committee

Found: in the CYP population.xvi 4.8Increases in the numbers of children with chronic conditions and rare

Tuesday 28th May 2024
Written Evidence - The Bar Council
BLCC0004 - Update on reducing the backlog in Criminal Courts

Public Accounts Committee

Found: Historically, such events were very rare indeed and normally due to sudden ill-health or similar unavoidable

Friday 24th May 2024
Written Evidence - The Rt Hon the Lord Blencathra PC
FDO0118 - Food, Diet and Obesity

Food, Diet and Obesity - Food, Diet and Obesity Committee

Found: Foodborne deaths from Shigella, Cryptosporidium, Giardia, adenovirus, astrovirus and rotovirus are all rare

Friday 24th May 2024
Written Evidence - Ruchika Joshi
GAI0133 - Governance of artificial intelligence (AI)

Governance of artificial intelligence (AI) - Science, Innovation and Technology Committee

Found: When a rare but extreme AI failure does occur randomly , firms’ net revenue may be affected by greater

Friday 24th May 2024
Report - Sixth Report - Enabling sustainable electrification of the economy

Environmental Audit Committee

Found: For example, 60% of all rare earth elements are currently located in the territory of the People’s Republic

Friday 24th May 2024
Written Evidence - Roxburgh Production Fund
FIL0143 - British film and high-end television

British Film and High-End Television - Culture, Media and Sport Committee

Found: pointed out that these producers are “cocktail producers” and points out that legit producers are rare

Thursday 23rd May 2024
Written Evidence - Andrew Jolley
FDO0099 - Food, Diet and Obesity

Food, Diet and Obesity - Food, Diet and Obesity Committee

Found: There are the rare cases where schools aren’t as proactive as they could be, but these are generally

Thursday 23rd May 2024
Written Evidence - British Dietetic Association (BDA) Paediatric Specialist Group
FDO0101 - Food, Diet and Obesity

Food, Diet and Obesity - Food, Diet and Obesity Committee

Found: factors include Cushing’s disease, hypothyroidism, concomitant drug use such as glucocorticoids, and rare

Thursday 23rd May 2024
Written Evidence - Gary Wilson Raising Boys' Achievement
BAE0025 - Boys’ attainment and engagement in education

Boys’ attainment and engagement in education - Education Committee

Found: incorporating pupil voice to negotiate change Reward systems that really work well are fairly rare

Thursday 23rd May 2024
Written Evidence - University of Oxford
BBC0005 - Future funding of the BBC World Service

Future funding of the BBC World Service - International Development Committee

Found: In countries where freedom of the press is limited, such as Russia and China, the BBCWS offers a rare

Thursday 23rd May 2024
Written Evidence - Al Arabiya
BBC0006 - Future funding of the BBC World Service

Future funding of the BBC World Service - International Development Committee

Found: original journalism, done in-market by trained investigative journalists is becoming increasingly rare

Thursday 23rd May 2024
Written Evidence - GrowTraffic Ltd
BBC0004 - Future funding of the BBC World Service

Future funding of the BBC World Service - International Development Committee

Found: influence and prestige. 7.In regions with limited press freedom, the BBC World Service serves as a rare

Wednesday 22nd May 2024
Oral Evidence - Guide dogs, Assistance Dogs UK, and Dogs for Good

Women and Equalities Committee

Found: in Northern Ireland, and we have seen that it has much lower levels of access refusal—it is really rare

Wednesday 22nd May 2024
Oral Evidence - UK Finance, and Institute of Chartered Accountants in England and Wales (ICAEW)

Treasury Committee

Found: It is very rare that we find people reporting those who have not self-reported themselves.

Wednesday 22nd May 2024
Oral Evidence - HSBC, Barclays, Lloyds, NatWest, Post Office, Cash Access UK, and LINK

Access to High Street Banking in Wales - Welsh Affairs Committee

Found: We can get that fixed straight away, but I would hope that is very rare and due to some particular

Wednesday 22nd May 2024
Oral Evidence - Network Rail and Great British Railways Transition Team, and Network Rail

Transport Committee

Found: It must be quite rare for a Select Committee to have a chair and a chief executive advocating their

Tuesday 21st May 2024
Oral Evidence - INEOS, LanzaTech UK, and Peel Hunt

Engineering biology - Science and Technology Committee (Lords)

Found: INEOS is a rare example of a company that has massive scale.



Written Answers
Drinking Water and Sewage: Standards
Asked by: Lord Bourne of Aberystwyth (Conservative - Life peer)
Friday 24th May 2024

Question to the Department for Environment, Food and Rural Affairs:

To ask His Majesty's Government what steps they are taking to address public concerns concerning (1) the quality of drinking water, and (2) the discharge of untreated waste into the sea, rivers and lakes.

Answered by Lord Douglas-Miller - Parliamentary Under-Secretary (Department for Environment, Food and Rural Affairs)

It is important not to conflate the quality of raw water and drinking water. Drinking water quality in England is of an exceptionally high standard and among the best in the world. Compliance with drinking water quality standards has been consistently high for a number of years, with a rate of 99.97% in 2022.

The Government published the Plan for Water in April 2023 – our comprehensive strategy for managing our water environment. It brings together the significant steps we have already taken with a suite of new policy actions. It aims to change the way that we manage water, improve water quality, and continue to secure our water supply through increased investment, stronger regulation and enforcement.

The Government is clear that the amount of sewage discharged into our waters is unacceptable. The Storm Overflow Discharge Reduction Plan (SODRP) sets out stringent targets to protect people and the environment; and prioritises for early action areas used for bathing, for growing shellfish or with high ecological importance. The SODRP will drive £60 billion investment between now and 2050 to improve storm overflows, the largest infrastructure programme in water company history.

We will not let companies get away with illegal activity and where breaches are found, the regulators will not hesitate to hold companies to account.

The recent cryptosporidium outbreak in Brixham is extremely unfortunate and it is a horrific experience for the people who have been made ill. The Drinking Water Inspectorate is actively investigating the cause, extent and actions of the company, and will take actions including enforcement action in due course to prevent this type of event happening again.

Thankfully, these events are very rare, and elsewhere consumers should continue to have confidence in their high quality drinking water.

Alcoholic Drinks: Misuse
Asked by: Rachael Maskell (Labour (Co-op) - York Central)
Friday 24th May 2024

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if she will undertake a study on trends in alcohol use among young people.

Answered by Andrea Leadsom - Parliamentary Under-Secretary (Department of Health and Social Care)

NHS England holds several data sources covering alcohol use for people aged under 18 years old, including the Smoking, Drinking and Drug Use among Young People survey. This data is collected every two years, and the next survey report is due Autumn 2024, and will include 2023 survey data.

The guidance from England’s Chief Medical Officer for healthcare professionals is clear, an alcohol-free childhood is the healthiest and best option. The Department promotes this through online platforms such as the NHS.UK website, and the Talk to FRANK online resource. Local authorities promote these guidelines as part of their public health duties.

Alcohol or drug dependence is rare in children and young people under the age of 18 years old, although they may be drinking problematically. For those that do need support, the Department has allocated £532 million of additional funding through to 2024/25 to support improvements in treatment, including facilitating 5,000 more young people into age-appropriate alcohol and drug treatment.

Drugs: Misuse
Asked by: George Galloway (Workers Party of Britain - Rochdale)
Thursday 23rd May 2024

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps she is taking to help tackle teenage drug addiction.

Answered by Andrea Leadsom - Parliamentary Under-Secretary (Department of Health and Social Care)

Alcohol or drug dependence is rare in young people under the age of 18 years old, although they may be drinking problematically. The most effective and sustainable approach to reducing alcohol and drug harms in young people is by giving them the best start in life, the best education possible, and keeping them safe, well, and happy.

Statutory guidance on relationships, sex, and health education requires all primary and secondary school pupils to be taught the key facts and risks of alcohol and drug use, as well as how to manage influences and pressure, and keep themselves healthy and safe. The Department has worked with the PSHE Association to develop the lesson plans on alcohol and is currently commissioning an update of the resources, to be published later this year. Current resources are available at the following link:

https://pshe-association.org.uk/drugeducation

Through the cross-Government Drug Strategy, the Department has allocated £532 million of additional funding through to 2024/25, to support improvements in alcohol and drug treatment, including facilitating 5,000 more young people into age-appropriate treatment by 2024/25. Local authorities can also invest their allocation in options from a menu of interventions, some of which include strengthening the services available to young people and families.

The Government also has an information and advice service called Talk to FRANK, which aims to reduce alcohol and drug use and its harms by providing awareness to young people, parents and concerned others:

https://www.talktofrank.com/

Cycleways: Visual Impairment
Asked by: Nick Fletcher (Conservative - Don Valley)
Thursday 23rd May 2024

Question to the Department for Transport:

To ask the Secretary of State for Transport, what steps his Department is taking to help ensure that cycle lanes are not a danger to (a) visually impaired and (b) blind pedestrians.

Answered by Guy Opperman - Parliamentary Under-Secretary (Department for Transport)

Design guidance for cycle infrastructure issued by the Department for Transport sets out that there should be separation of pedestrian and cycle infrastructure wherever possible. This guidance was developed in collaboration with stakeholders, including disability groups.

The Department for Transport established Active Travel England (ATE) to up-skill local authorities, enabling the installation of changes that are well thought through for all modes of travel, and disseminating best practice. As part of this, ATE has recently published a suite of design assistance and scheme review tools to support the development of accessible active travel schemes. The agency has also commissioned West Midlands Combined Authority to undertake research into crossing detection systems.

ATE will continue to work with organisations representing blind and visually impaired people to improve standards and further reduce the rare occasions that collisions occur.

Magnets: Supply Chains
Asked by: Pauline Latham (Conservative - Mid Derbyshire)
Thursday 23rd May 2024

Question to the Department for Business and Trade:

To ask the Secretary of State for Business and Trade, what steps she is taking to encourage rare earth magnet producers to the UK.

Answered by Alan Mak - Minister of State (Department for Business and Trade) (jointly with the Cabinet Office)

It has not proved possible to respond to the hon. Member in the time available before Prorogation.



Department Publications - Transparency
Thursday 30th May 2024
Ministry of Defence
Source Page: FOI responses published by MOD: week commencing 27 May 2024
Document: (PDF)

Found: These are rare in the recruit age group although in theory variant Creutzfeldt - Jakob disease could

Thursday 30th May 2024
Ministry of Defence
Source Page: FOI responses published by MOD: week commencing 27 May 2024
Document: (PDF)

Found: Social Media published an image of the outgoing commander being taken out in a Koenigsegg Regera, a rare



Department Publications - Policy and Engagement
Wednesday 29th May 2024
HM Treasury
Source Page: Treasury Minutes progress report – May 2024
Document: (PDF)

Found: strategies during that time but examples of successful digital transformation of services at scale are rare

Wednesday 29th May 2024
HM Treasury
Source Page: Treasury Minutes progress report – May 2024
Document: (PDF)

Found: strategies during that time but examples of successful digital transformation of services at scale are rare



Department Publications - Guidance
Friday 24th May 2024
Cabinet Office
Source Page: Procurement Act 2023 guidance documents - Define phase
Document: (PDF)

Found: Although these cases may be rare, a test of reasonable separability will also be used to guide decisions

Thursday 23rd May 2024
Department for Environment, Food and Rural Affairs
Source Page: Sustainable Farming Incentive scheme: expanded offer for 2024
Document: (PDF)

Found: aim is that at least 50% of the grazing livestock units (GLU) on sensitive grassland habitats are rare

Thursday 23rd May 2024
Department for Environment, Food and Rural Affairs
Source Page: Countryside hedgerow protection: removing hedgerows
Document: Countryside hedgerow protection: removing hedgerows (webpage)

Found: listed in the Wildlife and Countryside Act 1981 contains species that are endangered, vulnerable and rare



Department Publications - Policy paper
Thursday 23rd May 2024
Ministry of Justice
Source Page: Thematic review of quality of work undertaken with women
Document: the quality of work undertaken with women : A joint inspection by HM Inspectorate of Probation and HM Inspectorate of Prisons. (PDF)

Found: Unfortunate ly, these models are rare .



Non-Departmental Publications - Guidance and Regulation
May. 31 2024
Environment Agency
Source Page: NW10 6PW, Colt Data Centre Services UK Limited: environmental permit issued – EPR/DP3107LF/A001
Document: (PDF)
Guidance and Regulation

Found: A site wide failure is considered extremely rare as it would require a catastrophic regional failure

May. 29 2024
Medicines and Healthcare products Regulatory Agency
Source Page: Topical corticosteroids and withdrawal reactions
Document: Topical corticosteroids and withdrawal reactions (PDF)
Guidance and Regulation

Found: It is not currently known how common these reactions are, however they are thought to be rare .

May. 29 2024
Medicines and Healthcare products Regulatory Agency
Source Page: Topical corticosteroids and withdrawal reactions
Document: Topical corticosteroids and withdrawal reactions (webpage)
Guidance and Regulation

Found: It is not currently known how common these reactions are, however they are thought to be rare.



Non-Departmental Publications - News and Communications
May. 28 2024
Employment Appeal Tribunal
Source Page: First Greater Western Ltd v Mr AM Moussa: [2024] EAT 82
Document: First Greater Western Ltd v Mr AM Moussa: [2024] EAT 82 (PDF)
News and Communications

Found: Only in rare cases will causation will be established in the manner found in Jhuti , where the employer

May. 24 2024
Coal Authority
Source Page: Next phase of work to reduce metal mine pollution due to start
Document: Next phase of work to reduce metal mine pollution due to start (webpage)
News and Communications

Found: It will also bring a boost to biodiversity by the creation of rare calaminarian grassland habitats –

May. 23 2024
UK Health Security Agency
Source Page: VDEC rapidly develops an immunoassay for Mpox during the 2022 global outbreak
Document: VDEC rapidly develops an immunoassay for Mpox during the 2022 global outbreak (webpage)
News and Communications

Found: Throughout this time, the collaboration with the UKHSA’s Rare and Imported Pathogens Laboratory (RIPL



Non-Departmental Publications - Open consultation
May. 24 2024
Competition and Markets Authority
Source Page: Consultation on digital markets competition regime guidance
Document: (PDF)
Open consultation

Found: the CMA’s acceptance of a commitment once a conduct investigation has been launched will likely be rare



Non-Departmental Publications - Policy and Engagement
May. 23 2024
HM Prison and Probation Service
Source Page: Thematic review of quality of work undertaken with women
Document: the quality of work undertaken with women : A joint inspection by HM Inspectorate of Probation and HM Inspectorate of Prisons. (PDF)
Policy and Engagement

Found: Unfortunate ly, these models are rare .



Non-Departmental Publications - Statistics
May. 23 2024
Youth Justice Board for England and Wales
Source Page: Pre-sentence reports in the youth justice system
Document: (PDF)
Statistics

Found: copy and paste errors (e.g. the wrong name or the child’s pronoun changes) but this is considered rare

May. 23 2024
Youth Justice Board for England and Wales
Source Page: Pre-sentence reports in the youth justice system
Document: (webpage)
Statistics

Found: noticed copy and paste errors (e.g. the wrong name or the child’s pronoun changes) but this is considered rare



Non-Departmental Publications - Transparency
May. 23 2024
Rail Accident Investigation Branch
Source Page: RAIB: Annual Report 2023 (published 2024)
Document: (PDF)
Transparency

Found: lessons from accidents have driven safety improvements which have in turn made such events ever more rare




Rare, Genetic and Undiagnosed Conditions mentioned in Scottish results


Scottish Select Committee Publications
Wednesday 29th May 2024
Correspondence - Letter from Cabinet Secretary for Net Zero and Energy, 29 May 2024
Publication of the Scottish Nitrogen Balance sheet

Net Zero, Energy and Transport Committee

Found: The use of fertilisers in forestry is now very rare, particularly nitrogen based ones.

Wednesday 22nd May 2024
Correspondence - Letter from Iain Munro, Chief Executive, Creative Scotland providing an update in relation to Creative Scotland Funding Project Rein, 22 May 2024
Creative Scotland Funding

Constitution, Europe, External Affairs and Culture Committee

Found: This is a rare and highly un usual set of circumstanc es and I fully appreciate the public interest



Scottish Parliamentary Debates
New Petitions
11 speeches (11,544 words)
Wednesday 29th May 2024 - Committee
Mentions:
1: Carlaw, Jackson (Con - Eastwood) concerned about this issue.The Scottish Government’s response to the petition acknowledges that, on rare - Link to Speech

Wood-burning Stoves and Direct Emission Heating (Rural and Island Communities)
59 speeches (60,082 words)
Wednesday 29th May 2024 - Main Chamber
Mentions:
1: Burgess, Ariane (Green - Highlands and Islands) energy demand for heating in all new homes will be very low, which will further reduce the already rare - Link to Speech

Scottish Child Payment
75 speeches (67,987 words)
Thursday 23rd May 2024 - Committee
Mentions:
1: None To follow on from what Danny Dorling said, this is a very rare opportunity within social security policy - Link to Speech

Police (Ethics, Conduct and Scrutiny) (Scotland) Bill: Stage 1
119 speeches (58,477 words)
Thursday 23rd May 2024 - Committee
Mentions:
1: None those processes deliver outcomes most of the time, or a significant proportion of the time.It is the rare - Link to Speech

National Lyme Disease Awareness Month
20 speeches (40,071 words)
Wednesday 22nd May 2024 - Main Chamber
Mentions:
1: Torrance, David (SNP - Kirkcaldy) don’t.I have now found a tick-control collar that seems to work perfectly for him, so it is now very rare - Link to Speech

Scottish Languages Bill: Stage 1
185 speeches (92,693 words)
Wednesday 22nd May 2024 - Committee
Mentions:
1: Forbes, Kate (SNP - Skye, Lochaber and Badenoch) It is incredibly rare to be able to teach maths in Gaelic, but she may not be using all her skills because - Link to Speech

Circular Economy (Scotland) Bill: Stage 2
444 speeches (241,036 words)
Tuesday 21st May 2024 - Committee
Mentions:
1: Lennon, Monica (Lab - Central Scotland) interest in the issue—recognises the particular challenges that face people in tenement housing, not on a rare - Link to Speech

Tobacco and Vapes Bill
120 speeches (60,096 words)
Tuesday 21st May 2024 - Committee
Mentions:
1: None of sight, out of mind and out of fashion for the generation that is growing up now and to make it as rare - Link to Speech