Company lists · Data refreshed September 2026
Top 20 Rare disease research organizations based in France
RevenueBase identified 86 rare disease research organizations headquartered in France as of September 2026 and tracks 2,869 professional contacts across them, including 737 with verified work emails. Paris is the largest hub.
This list covers rare disease research organizations headquartered in France, 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 20 largest rare disease research organizations based in France
Ranked by team size| # | Company | Contacts | |||
|---|---|---|---|---|---|
| 1 | 571 contacts → | ||||
Partial evidence “L’AFM-Téléthon est une association de parents et de malades qui mène un combat sans relâche contre des maladies génétiques, rares et lourdement invalidantes.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 2 | 321 contacts → | ||||
Indirect evidence “The Institut Pasteur de Lille foundation was created in 1894 by the will of Louis Pasteur, Albert Calmette and the local officials.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 3 | 293 contacts → | ||||
Indirect evidence “Généthon est un laboratoire à but non lucratif, créé et soutenu par l’AFM-Téléthon depuis 1990.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 4 | 118 contacts → | ||||
Strong evidence “Transforming Rare Disease Treatment At Orphalan we identify, develop, and provide access to innovative treatments for patients with rare diseases to make a positive and meaningful…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 5 | 75 contacts → | ||||
Strong evidence “EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over rare disease patient organisations from more than 70 countries that work together to improve the lives of…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 6 | 38 contacts → | ||||
Partial evidence “Fondée en 1992 par Guy Alba, l’Association Européenne contre les Leucodystrophies (ELA) regroupe des familles qui se mobilisent pour vaincre ces maladies génétiques rares qui…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 7 | 36 contacts → | ||||
Strong evidence “Imagine Institute for genetic disease is a French translational research institute which performs state-of-the-art research in order to better understand genetic diseases.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 8 | 21 contacts → | ||||
Strong evidence “Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 9 | 11 contacts → | ||||
Indirect evidence “French Retina Association is member of Retina International where more than 40 countries are involved.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 10 | 9 contacts → | ||||
Strong evidence “AzurBio Pharma is a new international pharmaceutical company developing its products and activities in the area of pharma innovation and rare or serious diseases.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 11 | 9 contacts → | ||||
Partial evidence “Maladies Rares Info Services est le service national d'écoute, d'information et d'orientation des personnes atteintes d'une maladie rare ou en errance diagnostique, de leurs…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 12 | 8 contacts → | ||||
Partial evidence “La filière de santé FAVA-Multi, maladies vasculaires rares avec atteinte multisystémique, est constituée depuis le 1er Septembre 2014.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 13 | 6 contacts → | ||||
Partial evidence “Le Groupement National de Coopération Handicaps Rares (GNCHR) est un réseau national au service des personnes en situation de handicap rare, de leur entourage et des…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 14 | 5 contacts → | ||||
Partial evidence “Depuis 1990, Vaincre les Maladies Lysosomales (VML) est l'association des patients, parents et tous ceux qui se battent pour vaincre les 60 maladies génétiques rares lysosomales.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 15 | 4 contacts → | ||||
Indirect evidence “Association Française contre l’#Amylose (AFCA) Depuis 1994, l’Association Française contre l’Amylose (AFCA) agit pour améliorer la vie des personnes touchées par toutes les formes…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 16 | 4 contacts → | ||||
Strong evidence “Zanalys was born from a conviction, that no disease is rare enough not to attract the attention of the scientific and medical communities, and from a sense of urgency, that of the…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 17 | 2 contacts → | ||||
Indirect evidence “CTRS is a French pharmaceutical company with a strong and growing international presence.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 18 | 2 contacts → | ||||
Strong evidence “The Foundation promotes the accurate diagnosis and care of patients affected by a rare disease.” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 19 | 2 contacts → | ||||
Indirect evidence “We help the healthcare community understand unmet needs, measure the impact of innovations, and co-construct concrete solutions with all stakeholders, from the field to…” Source: RevenueBase Database · checked Sep 21, 2026Thanks. The Data Team will review it. | |||||
| 20 | 1 contacts → | ||||
Indirect evidence “By bringing together new stakeholders, the #MarMaRainstitute aims to promote #interdisciplinarity in the field of #rarediseases at different levels.” 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 research 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 research organizations.
- Partial evidence
- Its own public description names part of rare disease research 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 research 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 20 of 86 rare disease research organizations based in France
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Rare disease research organizations based in France at a glance
As of Sep 21, 2026Companies by employee count
Email recency for this list is measured worldwide rather than for France, so it is reported there. Company counts and contact totals on this page are exact for France, over 86 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 research 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 France whose own description of what they do matches “rare disease research 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 research 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 research organizations, and records with no verified work email. Companies headquartered outside France 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, 737 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.
Rare disease research organizations by metro
- Rare disease research organizations in Paris27
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 research 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 research organizations are there based in France?
RevenueBase identified 86 rare disease research organizations headquartered in France 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?
Afm-Téléthon, headquartered in Cedex, tops this list with the largest team on record.
Which city has the most rare disease research organizations?
Paris leads with 27 headquartered companies, followed by Lille (4) and Lyon (4).
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 737 verified decision-maker contacts tracked across these 86 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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