Company lists · Data refreshed September 2026
Top 21 Rare disease organizations based in the United Kingdom
RevenueBase identified 47 rare disease organizations headquartered in the United Kingdom as of September 2026 and tracks 967 professional contacts across them, including 541 with verified work emails. London is the largest hub.
This list covers rare disease organizations headquartered in the United Kingdom, matched on what each company actually does as described in its own words. Ranked by team size, largest first. Every row shows the company's own description, its RevenueBase Smart Search rating, and when it was last checked. Data refreshed September 21, 2026.
Published by RevenueBase, a B2B data infrastructure company. This list was built with RevenueBase Smart Search, the natural-language company search RevenueBase customers use to build their own targeted lists and unlock verified emails and direct dials at the companies on them. How these lists are built and judged.
The 21 largest rare disease organizations based in the United Kingdom
Ranked by team size| # | Company | Contacts | |||
|---|---|---|---|---|---|
| 1 | 409 contacts → | ||||
Strong evidence “LifeArc® is a self-funded medical research organisation with one clear purpose – transforming the lives of people living with rare diseases and drug-resistant infections.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 2 | 196 contacts → | ||||
Indirect evidence “We’re committed to supporting patients and their caregivers in every way we can.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 3 | 70 contacts → | ||||
Strong evidence “We are committed to transforming the lives of people affected by cancer or rare disease, globally.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 4 | 50 contacts → | ||||
Strong evidence “As the UK and Ireland affiliate of Sobi, an international biopharmaceutical company, we are transforming life for people with rare diseases.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 5 | 34 contacts → | ||||
Strong evidence “Sanius Health is a London based, patient-owned company which focuses primarily on patients living with rare and chronic diseases at a global level.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 6 | 24 contacts → | ||||
Strong evidence “The AKU Society is a patient group that helps people with AKU, a rare genetic disease, and funds research to find a cure.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 7 | 22 contacts → | ||||
Strong evidence “Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 8 | 21 contacts → | ||||
Partial evidence “Our mission is to shape a medical profession that can provide people living with rare conditions a timely diagnosis and excellent care.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 9 | 19 contacts → | ||||
Partial evidence “Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 10 | 12 contacts → | ||||
Strong evidence “Cambridge Rare Disease Network is a platform for change.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 11 | 9 contacts → | ||||
Partial evidence “RareCan supports people living with rare cancers to better understand their situation and make informed decisions with confidence.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 12 | 6 contacts → | ||||
Partial evidence “We are a not for profit organisation (recognised by HMRC as a charity), working to support anyone living with or caring for someone with a rare condition.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 13 | 6 contacts → | ||||
Strong evidence “RARE Revolution Publishing Ltd is an independent publishers dedicated to elevating the voice of the rare disease community through its magazine, online presence, disease awareness…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 14 | 5 contacts → | ||||
Strong evidence “We are an entrepreneurial pharmaceutical company working to drive change in rare diseases.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 15 | 4 contacts → | ||||
Strong evidence “At DHT.health, we exist to make a difference in rare and underserved diseases by creating meaningful change through research.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 16 | 4 contacts → | ||||
Indirect evidence “We support and educate porphyria patients, relatives and medical professionals about the porphyrias to improve the lives of those living with the disorders.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 17 | 4 contacts → | ||||
Partial evidence “UK charity focusing on the support, understanding and management of rare growth conditions to improve the lives of children, adults and families affected.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 18 | 3 contacts → | ||||
Strong evidence “Oranda Therapeutics is a rare disease company, focused on acquiring, developing and commercialising medicines that improve the lives of patients in areas of high unmet need.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 19 | 3 contacts → | ||||
Strong evidence “ASPIRE BIOSCIENCES aims to find new treatments for unaddressed and rare diseases, by creating and nurturing working partnerships between rare disease patient organisations and…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 20 | 1 contacts → | ||||
Strong evidence “We help companies developing new therapies for rare and genetic diseases to find and hire executive level talent for their senior medical and commercial roles across Europe.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 21 | 1 contacts → | ||||
Partial evidence “FYMCA Medical Ltd was set up as a dedication to FYMCA directors, Chris and Flo’s son, who had a rare disorder without the exact cause ever identified.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
RevenueBase Smart Search
RevenueBase Smart Search assesses information from a company’s LinkedIn profile, information supplied directly by the company, its website, and other publicly available sources. It uses that information to rate how closely the company relates to this list’s category: rare disease organizations. Every row carries its rating and the description the rating was read from, so each one can be checked rather than taken on trust.
- Strong evidence
- The company's own public description of its business names rare disease organizations.
- Partial evidence
- Its own public description names part of rare disease organizations, so it works in or next to the category without describing itself that way.
- Indirect evidence
- The description shown does not name rare disease organizations. The match rests on the rest of the company's public profile rather than the one sentence quoted here, so this is the rating to check first.
RevenueBase Smart Search is how these lists are built: RevenueBase's data engine and AI assemble the companies that match a category defined in a user's own words, so a list can be about what companies actually do rather than about whichever industry code they were filed under.
Showing 21 of 47 rare disease organizations based in the United Kingdom
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Rare disease organizations based in the United Kingdom at a glance
As of Sep 21, 2026Companies by employee count
Email recency for this list is measured worldwide rather than for United Kingdom, so it is reported there. Company counts and contact totals on this page are exact for United Kingdom, over 47 companies.
How this list was built
Company categories are rarely black and white. RevenueBase reads each company's own description of its business to decide whether it belongs among rare disease organizations, so some rows will be adjacent to the category rather than pure plays. The description and RevenueBase Smart Search rating on every row are there so you can check each match yourself.
- Source
- The RevenueBase company graph: 60 million companies and 398.9 million professional contacts resolved from primary sources, queried with RevenueBase Smart Search, the natural-language company search available to every RevenueBase user.
- What qualifies
- Companies headquartered in the United Kingdom whose own description of what they do matches “rare disease organizations”. Matching reads each company's description, not its industry code or its name.
- RevenueBase Smart Search
- RevenueBase Smart Search is how this list is assembled and how each row is rated. RevenueBase's data engine and AI assess a company's LinkedIn profile, information supplied directly by the company, its website and other publicly available information, then relate it to a category defined in a user's own words. Each row is rated strong evidence (its own description names rare disease organizations), partial evidence (it names part of the category) or indirect evidence (the description shown names none of it and the match rests on the rest of the company's profile). The description supporting each rating is quoted on the row.
- What we exclude
- Companies whose own description does not clearly place them among rare disease organizations, and records with no verified work email. Companies headquartered outside United Kingdom are excluded even when they keep an office there.
- Match quality
- In blind human judging of this matching method, 86% of matched companies were on target. Expect roughly 1 in 7 rows to be adjacent to the category rather than a pure play. Every row shows the company's own description and its RevenueBase Smart Search rating so you can judge each match yourself. Read the full methodology: how the lists are built, how the judging worked, and what the figure means.
- Ranking
- Team size, largest first: companies are ordered by the number of professionals RevenueBase tracks at each one. Employee ranges shown are reported bands, for context.
- Verification
- Every listed company carries at least one verified work email, 541 across the full list. Contacts re-verify on a rolling cadence, and each contact's own verification date is shown inside RevenueBase.
- Refresh
- This page's figures were pulled from the company graph on September 21, 2026. Lists refresh periodically as the graph is re-checked.
- Corrections
- Wrong category, wrong headquarters, or a company that has closed? Use “Report an issue” on any row. Reports go to the RevenueBase Data Team and feed back into the company graph.
Frequently asked
What is RevenueBase Smart Search?
RevenueBase Smart Search is how RevenueBase decides which companies belong on this list and how strongly each one fits. Its data engine and AI assess a company's LinkedIn profile, information supplied directly by the company, its website and other publicly available information, then relate it to the category the list is about. Each row is rated strong evidence when the company's own description names rare disease organizations, partial evidence when it names part of the category, and indirect evidence when the description shown names none of it and the match rests on the rest of the company's profile.
How many rare disease organizations are there based in the United Kingdom?
RevenueBase identified 47 rare disease organizations headquartered in the United Kingdom as of September 2026, matched on each company's own description of what it does rather than its industry code.
What is the largest company on this list?
Lifearc, headquartered in London, tops this list with the largest team on record.
Which city has the most rare disease organizations?
London leads with 12 headquartered companies, followed by Cambridge (6) and Manchester (2).
How do I get contact information for these companies?
A free RevenueBase account lets you run this exact search and work the top results, verified emails and direct dials included. Upgrading unlocks all 541 verified decision-maker contacts tracked across these 47 companies.
How current is this list?
The list refreshes periodically as the company graph is re-checked. This page's figures were pulled on September 21, 2026.
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About this data
RevenueBase is a B2B data infrastructure company. Its company graph covers 60 million companies and 398.9 million professional contacts, with emails verified on a rolling cadence rather than scraped once and left to decay. These company lists are generated directly from that graph with RevenueBase Smart Search, the same natural-language company search every RevenueBase user has: describe a market in plain words, get the companies that match, and add verified emails and direct dials for the people at them. It is the same data that powers RevenueBase's B2B data products, and a free account includes 500 credits to start. How these lists are built and judged.
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