Which MPs and peers raise rare diseases most in Parliament?

Jim Shannon, Clive Efford, Liz Twist lead the ranking of MPs and peers on rare diseases, based on every Hansard contribution since 9 July 2024.

How is the rare diseases ranking calculated?

Vital Signs ranks MPs and members of the House of Lords by a weighted score of their Hansard contributions on Rare diseases — speeches, written questions and committee work — over the course of this Parliament (since 9 July 2024). Ministerial statements and debate speeches carry more weight than written answers; every contribution counts at full weight however early in the Parliament it was made. Contributions are matched to this topic on whole-word keyword matching, so "send" is never mistaken for SEND and "career" is never mistaken for care. Ministers and shadow ministers are labelled, because answering on a brief is their job rather than a choice to raise it; their scores are shown as-is, not adjusted.

Vital Signsby Bridgehead

Hansard to 28 October 2026 · 30,907 contributions indexed · 1,439 MPs & peers

01 Topic · Healthcare

Vital Signs: Rare diseases

Change topic · 29 health and social care topics

Who is shaping the debate on rare diseases: in Parliament, in the press, and among the experts the press turns to.

See the 11 search terms behind this page ↓

02 Who is talking · pick a lens

03 The signal · Where it is spoken from

202

of 1,439 MPs & peers have spoken on rare diseases since 9 July 2024 · 326 Commons contributions from 155 constituencies · latest sitting indexed 28 October 2026

0Hansard contributions per seat15

Seats shaded by Hansard contributions on this topic. Lines join the 9 MPs in this list to their constituencies; peers have no seat and no line.

#Most activeSignalScore

01—Jim ShannonDemocratic Unionist Party · Strangford · Commons45
02—Clive EffordLabour · Eltham and Chislehurst · Commons42
03—Liz TwistLabour · Blaydon and Consett · Commons27
04—Baroness MerronMinisterLabour · House of Lords · Parliamentary Under-Secretary (Department of Health and Social Care)26
05—Dr Caroline JohnsonShadowConservative · Sleaford and North Hykeham · Commons · Shadow Minister (Health and Social Care)21
06—Ashley DaltonLabour · West Lancashire · Commons18
07—Frank McNallyLabour · Coatbridge and Bellshill · Commons18
08—Robbie MooreShadowConservative · Keighley and Ilkley · Commons · Shadow Minister (Environment, Food and Rural Affairs)18
09—Mrs Sharon HodgsonLabour · Washington and Gateshead South · Commons18
10—Karin SmythMinisterLabour · Bristol South · Commons · Minister of State (Department of Health and Social Care)18

Score is a weighted Hansard contribution score for this topic since 9 July 2024. Portraits: UK Parliament Members API. Rank change (▲/▼) is vs. 7 days ago.

Hansard · weekly mentions

39 mentions in the last 8 sitting weeks, 52 in the 8 before

Recess weeks are not counted: sitting weeks are compared with sitting weeks, and the current week is left off until it is complete. Parliament was in recess 21 Sept to 11 Oct 2026. 437 mentions since 9 July 2024.

Press · articles per week

635 articles in 56 weeks, 256 of them in the last five

Source: Guardian archive, trade press and news search: a sample of coverage, not an exhaustive count. Weekly article counts to w/c 19 Oct; weeks not yet ingested are dropped rather than shown as zero.

Parliament · party split

Share of scored contributions

Labour97 members53%
Conservative42 members20%
Liberal Democrat34 members13%
Democratic Unionist Party2 members4%
Others (9 groups)27 members9%

Labour members account for 53% of the scored contributions on this topic, across 13 party groups in both Houses.

Parliament · reach

Members who have spoken

202of 1,439 MPs & peers

14% of the roster has spoken on this topic since 9 July 2024: one square per member, 155 MPs (navy) and 47 peers (cobalt).

Briefing · Parliament

MPs and peers raise sickle cell care, infected blood claims, and rare disease data and screening

Sickle cell care was the most sustained thread. In the Commons Health Bill debate on 7 September, Janet Daby (Labour) argued for new clause 162, which would require the Secretary of State to identify patients using specialised services and report back. Karin Smyth (Labour) replied that duties already exist and promised to write to her, while Ben Coleman (Labour) said the issue would be taken more seriously if it mainly affected white people.
Sickle cell also came up elsewhere. Daby told the 11 September assisted dying debate that the disorder is "grossly lacking in research funding". In the Lords Health Bill debate on 13 October, Baroness Cash (Conservative) cited a parliamentary inquiry that found avoidable deaths and argued that poor ethnicity data stops services being planned or audited.
Infected blood was raised in three debates. Ian Lavery (Labour) said on 10 September that some 18,000 infected and affected people had not begun claims. In the Lords Public Office (Accountability) Bill debates, Baroness Brinton (Liberal Democrat) argued on 21 October for a permanent independent compensation body, and she and Baroness Featherstone (Liberal Democrat) spoke on 1 September about cover-up and accountability.
On research and screening, peers in the 10 September Lords debate on patient data used the cystic fibrosis registry as their example. Baroness Brinton, Lord Patel (Crossbench) and Baroness Nargund (Labour) argued that data access serves research, including for rare diseases. In Commons topical questions on 20 October, Yvette Cooper (Labour) said the UK National Screening Committee had not yet found enough evidence to add MLD to newborn screening.
Motor neurone disease appeared in several settings. Baroness Merron (Labour) listed a new MND pathway among Baroness Casey's early recommendations being delivered, in the Lords on 20 October. Jim Shannon (Democratic Unionist Party) quoted a constituent with MND against assisted dying on 11 September.

Verbatim

We are asking them to measure, publish and report, in order to ensure basic accountability for patients with rare conditions, and for geographically dispersed people, predominantly from black and minority ethnic backgrounds, so that they have services that work.
Janet Daby · Labour, Lewisham East · Health Bill · 7 Sept 2026
Read in Hansard (opens in a new tab)
It has been nearly two years since the contaminated blood inquiry report was published. People think that the matter is finished, but it is not: some 18,000 infected and affected individuals still have not begun their claims.
Ian Lavery · Labour, Blyth and Ashington · Topical Questions · 10 Sept 2026
Read in Hansard (opens in a new tab)
These days, using patient data, eligible people with cystic fibrosis can receive new drugs that treat the underlying causes by targeting the faulty CFTR protein.
Baroness Brinton · Liberal Democrat, House of Lords · Patient Data: Research · 10 Sept 2026
Read in Hansard (opens in a new tab)
It has looked at newborn screening and concluded that there is not yet enough evidence to include MLD in the test.
Yvette Cooper · Labour, Pontefract, Castleford and Knottingley · Topical Questions · 20 Oct 2026
Read in Hansard (opens in a new tab)

AI-drafted from 26 Hansard contributions over 22 sitting days · 1 September 2026 to 22 October 2026 · No sittings were recorded between 18 September 2026 and 11 October 2026. · quotes are exact copies of the Hansard record, speakers taken from the record · generated 25 Oct 2026 · how briefings are made

Expert voices · press citations

The most quoted voices on this topic

40 of 231 expert voices, 77 citations across 5 groups. Click a group to open it as a lens on the map.

Clinicians

7 · 16 citationsOpen lens ↑

Dr Eamon McCarronhonorary senior lecturer at the University of Sheffield's School of Medicine and Population Health and consultant and clinical lead in adult inherited metabolic disorders at the Sheffield Adult Metabolic Service3
Dr Karolina Stepienconsultant in adult inherited metabolic diseases at Salford Royal Hospital3
Martin Turnerone of the UK's leading specialist neurologists dealing with MND3
Andy Vaughtonformer NHS consultant anaesthetist2
Professor Rob GallowaySenior emergency doctor at Royal Sussex County Hospital in Brighton2
Timothy Yu, MD, PhDMD, PhD2
Dr Julian Spinksdoctor and KMTV health expert1

Academics

21 · 39 citationsOpen lens ↑

Vinay Prasadtop vaccine official at the Food and Drug Administration4
David WeitzScientific co-founder, Ride Therapeutics; Professor at Harvard University4
Tuomas KnowlesScientific co-founder, Ride Therapeutics; Professor at University of Cambridge4
Tracy Beth Høegsports medicine physician and senior adviser for clinical sciences at FDA3
Prof Dame Sue Hillchief scientific officer for England2
Benjamin RomeHarvard healthy policy researcher2
David Liucore institute member at the Broad Institute2
Dominic Roweclinical neurologist2
Dr Jacqeline BarryChief Clinical Officer, Cell and Gene Therapy Catapult2
Dr. Ning XuOptical engineer at Tsinghua University in Beijing, China2
Wendy Chung, MD, PhDPhysician, CNBC Advisory Board member2
Professor Lucy ChappellCEO of the NIHR1
Dr Marty MakaryM.D., FDA Commissioner1
Dr Karen LowNIHR Clinical Research Fellow in Bristol Medical School: Population Health Sciences (PHS)1
Dan Jerniganformer director of the National Center for Emerging and Zoonotic Infectious Diseases1
Dorit Reissprofessor of law at UC Hastings College of Law1
Dr Joe Abbottophthalmologist1
Jay BhattacharyaNIH Director1
Aaron KesselheimHarvard Medical School researcher1
Albee MessingPh.D., neuroscientist at the University of Wisconsin in Madison1
Alexander Hoischen, PhDprofessor of genomic technologies at Radboud University Medical Center1

Sector leaders

10 · 18 citationsOpen lens ↑

Jessica Leedirector of research at the My Name'5 Doddie Foundation3
Sam CohenCo-founder and CEO, Ride Therapeutics3
Julian BeachExecutive Director of Healthcare Quality and Access at the MHRA2
Amy Comstock RickDirector, Rare Disease Innovation Hub2
Andrew ParkerPhD, executive drug development consultant, Quotient Sciences2
Vlad CoricCEO of Biohaven2
Dr Rich Scottchief executive of Genomics England1
Tanya CurryChief Executive of the MND Association1
Aileen Li, PhDHead of Academic Partnering at GondolaBio1
Alexandre MejatScientific International Affairs Manager at AFM Télethon1

Business leaders

1 · 1 citationOpen lens ↑

Walid Abi-SaabuniQure N.V.1

Regulators & officials

1 · 3 citationsOpen lens ↑

Helen KnightNational Institute for Health and Care Excellence (NICE)3

Methodology

How Vital Signs ranks

Parliament. Every Hansard contribution on a topic since 9 July 2024 is scored by type and summed per member; the map colours each constituency by how often its MP has raised the topic. Peers sit in no constituency and are ranked but not mapped.

Press. Bylines rank journalists and quotations rank expert voices, across the Guardian archive and trade press Vital Signs has read. A voice’s pin marks its organisation’s base, never the person’s home.

Briefings. Drafted by an AI model from the underlying Hansard text or articles. Every quotation in a Parliament briefing is an exact copy of the Hansard record and linked to it; press quotations are as the linked articles reported them. The speaker is always taken from the record, not the model.

Search terms for Rare diseases. These are the exact terms used to find what appears on this page.

Parliament: 11 terms

A Hansard contribution counts toward this topic when it contains any of these, matched as whole words.

rare disease
rare conditions
orphan drugs
genetic disorder
cystic fibrosis
motor neurone disease
muscular dystrophy
Huntington
haemophilia
sickle cell
newborn screening

News search: 8 terms, run each week

Each term is searched separately on Google News. Where a term only extends an earlier one (“cancer treatment” after “cancer”), it is skipped.

rare disease
rare conditions
orphan drugs
genetic disorder
cystic fibrosis
motor neurone disease
muscular dystrophy
Huntington

Read the full methodology →Check your MP’s record →

Profiles