Company lists · Data refreshed September 2026

Top 21 Rare disease organizations based in the United Kingdom

RevenueBase identified 47 company matches for rare disease organizations associated with 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 company matches for rare disease organizations associated with the United Kingdom, found by RevenueBase SmartSearch using the meaning of business descriptions in its company graph at Exact. Ranked by professionals tracked, largest first. Rows show recorded descriptions where available, Exact search membership and the snapshot date. Data refreshed September 21, 2026.

Published by RevenueBase, a B2B data infrastructure company. This list was built with RevenueBase SmartSearch, 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.

How to read this list RevenueBase SmartSearch · Exact Recorded Sep 21, 2026 How this list was built
47Companies
967Contacts tracked
541Verified emails
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The 21 largest rare disease organizations based in the United Kingdom

Ranked by team size
Top 21 of 47 company matches for rare disease organizations based in the United Kingdom, ordered by professional contacts tracked in RevenueBase, largest first. Recorded Sep 21, 2026. The RevenueBase SmartSearch column shows Exact match membership in this saved search. Click a contact count to view that company's people. Totals use company locations recorded by RevenueBase; the displayed preview is a smaller selection.
#CompanyRevenueBase SmartSearchHeadquartersEmployeesContacts
1Exact matchLondon, United KingdomHQ recorded Sep 21, 2026201-500409 contacts →

Exact match

“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.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
2Exact matchCambridge, United KingdomHQ recorded Sep 21, 202651-200196 contacts →

Exact match

“We’re committed to supporting patients and their caregivers in every way we can.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
3Exact matchHemel Hempstead, United KingdomHQ recorded Sep 21, 2026201-50070 contacts →

Exact match

“We are committed to transforming the lives of people affected by cancer or rare disease, globally.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
4Exact matchGreat Abington, United KingdomHQ recorded Sep 21, 202651-20050 contacts →

Exact match

“As the UK and Ireland affiliate of Sobi, an international biopharmaceutical company, we are transforming life for people with rare diseases.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
5Exact matchLondon, United KingdomHQ recorded Sep 21, 202611-5034 contacts →

Exact match

“Sanius Health is a London based, patient-owned company which focuses primarily on patients living with rare and chronic diseases at a global level.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
6Exact matchCambridge, United KingdomHQ recorded Sep 21, 20261-1024 contacts →

Exact match

“The AKU Society is a patient group that helps people with AKU, a rare genetic disease, and funds research to find a cure.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
7Exact matchCambridge, United KingdomHQ recorded Sep 21, 20261-1022 contacts →

Exact match

“Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
8Exact matchLoudwater, United KingdomHQ recorded Sep 21, 20261-1021 contacts →

Exact match

“Our mission is to shape a medical profession that can provide people living with rare conditions a timely diagnosis and excellent care.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
9Exact matchBristol, United KingdomHQ recorded Sep 21, 202611-5019 contacts →

Exact match

“Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
10Exact matchCambridge, United KingdomHQ recorded Sep 21, 20261-1012 contacts →

Exact match

“Cambridge Rare Disease Network is a platform for change.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
11Exact matchHexham, United KingdomHQ recorded Sep 21, 20261-109 contacts →

Exact match

“RareCan supports people living with rare cancers to better understand their situation and make informed decisions with confidence.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
12Exact matchNewtownards, United KingdomHQ recorded Sep 21, 20261-106 contacts →

Exact match

“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.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
13Exact matchAlford, United KingdomHQ recorded Sep 21, 20261-106 contacts →

Exact match

“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…”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
14Exact matchWales, United KingdomHQ recorded Sep 21, 20261-105 contacts →

Exact match

“We are an entrepreneurial pharmaceutical company working to drive change in rare diseases.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
15Exact matchEngland, United KingdomHQ recorded Sep 21, 20261-104 contacts →

Exact match

“At DHT.health, we exist to make a difference in rare and underserved diseases by creating meaningful change through research.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
16Exact matchDurham, United KingdomHQ recorded Sep 21, 20261-104 contacts →

Exact match

“We support and educate porphyria patients, relatives and medical professionals about the porphyrias to improve the lives of those living with the disorders.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
17Exact matchNewcastle Upon Tyne, United KingdomHQ recorded Sep 21, 20261-104 contacts →

Exact match

“UK charity focusing on the support, understanding and management of rare growth conditions to improve the lives of children, adults and families affected.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
18Exact matchLondon, United KingdomHQ recorded Sep 21, 20261-103 contacts →

Exact match

“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.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
19Exact matchCambridge, United KingdomHQ recorded Sep 21, 20261-103 contacts →

Exact match

“ASPIRE BIOSCIENCES aims to find new treatments for unaddressed and rare diseases, by creating and nurturing working partnerships between rare disease patient organisations and…”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
20Exact matchSt. Albans, United KingdomHQ recorded Sep 21, 20261-101 contacts →

Exact match

“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.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase
21Exact matchManchester, United KingdomHQ recorded Sep 21, 20261-101 contacts →

Exact match

“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.”

Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase

Showing 21 of 47 rare disease organizations based in the United Kingdom

See the full list, filter by size, metro and specialty, and access 541 tracked professional contacts with verified work emails. Direct dials are available where recorded.

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Rare disease organizations based in the United Kingdom at a glance

As of Sep 21, 2026
55.9%Verified-email coverage
20.6Average contacts per company
1-10Median size (employees)
25.5%Largest-city concentration · London
Sep 21, 2026Page data refreshed

Companies by employee count

1-10
34
11-50
7
51-200
3
201-500
3

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

The recorded descriptions help you assess these company matches. Check a company’s website for its current services and locations.

Source
The RevenueBase company graph: 60 million companies and 398.9 million professional contacts resolved from primary sources, queried with RevenueBase SmartSearch, the natural-language company search available to every RevenueBase user.
What qualifies
Company records associated with the United Kingdom whose business descriptions match “rare disease organizations” by meaning at the Exact setting. Descriptions are compiled in the RevenueBase company graph from public websites, profiles and company information where available; they are not guaranteed quotations from the company's website.
RevenueBase SmartSearch
Describe a niche company in your own words to find businesses by meaning. Exact, Similar, Related and Broad control the breadth of RevenueBase SmartSearch. This saved list uses Exact. Each row's Exact match badge shows inclusion in that search, not an individual score or a service-quality judgment.
Public preview
The public preview omits records without a verified work email. Where headquarters information is recorded, preview rows are also filtered to this page’s location. Dataset totals and geographic summaries describe the full matched records before these preview filters.
Match quality
RevenueBase's August 25, 2026 study assessed 4,198 description/company pairs across matching settings. The publisher reports 86% good or better at Exact. This evaluates the method across queries; it does not audit this individual list. Recorded company descriptions, where available, help you judge each match yourself. Read the full methodology: how the lists are built and what the study measures.
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 displayed company carries at least one verified work email. RevenueBase tracks 541 professional contacts with verified work emails across the full matched dataset. 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.
Record context
Company records and descriptions can change. Check the company's website for its current services and locations.

Frequently asked

What is RevenueBase SmartSearch?

RevenueBase SmartSearch finds niche companies by the meaning of their business descriptions in the RevenueBase company graph. Exact, Similar, Related and Broad control how closely companies must fit your description. This list uses Exact for “rare disease organizations”; each Exact match badge shows search membership, not an individual similarity or quality score.

How many rare disease organizations are there based in the United Kingdom?

RevenueBase identified 47 company matches for rare disease organizations associated with the United Kingdom as of September 2026, using the meaning of business descriptions at Exact. This is the recorded matched set in the RevenueBase company graph.

What is the largest company on this list?

Lifearc tops the displayed preview by professional contacts tracked in RevenueBase. Recorded headquarters appear in the company rows.

Which city has the most rare disease organizations?

London leads with 12 company records, 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 limited free results with 500 credits to start. Upgrading provides access to the 541 professional contacts with verified work emails tracked across these 47 companies; direct dials are available where recorded.

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 SmartSearch, 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.