Company lists · Data refreshed September 2026

Top 15 Rare disease organizations based in France

RevenueBase identified 72 rare disease organizations headquartered in France as of September 2026 and tracks 1,560 professional contacts across them, including 473 with verified work emails. Paris is the largest hub.

This list covers rare disease 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.

How to read this list HQ checked on every row RevenueBase Smart Search rating on every row Refreshed Sep 21, 2026 86% judged on-target in blind review
72Companies
1,560Contacts tracked
473Verified emails
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The 15 largest rare disease organizations based in France

Ranked by team size
Top 15 of 72 rare disease organizations based in France, ranked by team size, largest first. Data refreshed Sep 21, 2026. RevenueBase Smart Search rates how each company's information relates to rare disease organizations: strong evidence (its own description names it), partial (names part of it), indirect (matched on the rest of its profile rather than the description shown). Click a contact count to view that company's people.
#CompanyRevenueBase Smart SearchHeadquartersEmployeesContacts
1Partial evidenceEvry, FranceHQ checked Sep 21, 2026201-500571 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, 2026
2Strong evidenceParis, FranceHQ checked Sep 21, 202651-200118 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, 2026
3Strong evidenceParis, FranceHQ checked Sep 21, 202611-5075 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, 2026
4Partial evidenceLaxou, FranceHQ checked Sep 21, 202611-5038 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, 2026
5Strong evidenceParis, FranceHQ checked Sep 21, 20261-1021 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, 2026
6Indirect evidenceColomiers, FranceHQ checked Sep 21, 202611-5011 contacts →

Indirect evidence

“French Retina Association is member of Retina International where more than 40 countries are involved.”

Source: RevenueBase Database · checked Sep 21, 2026
7Partial evidenceParis, FranceHQ checked Sep 21, 20261-109 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, 2026
8Partial evidenceParis, FranceHQ checked Sep 21, 20261-108 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, 2026
9Partial evidenceClichy, FranceHQ checked Sep 21, 20261-106 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, 2026
10Partial evidenceMassy, FranceHQ checked Sep 21, 20261-105 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, 2026
11Indirect evidenceMarseille, FranceHQ checked Sep 21, 20261-104 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, 2026
12Strong evidenceMontrouge, FranceHQ checked Sep 21, 20261-104 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, 2026
13Indirect evidenceBoulogne-Billancourt, FranceHQ checked Sep 21, 202611-502 contacts →

Indirect evidence

“CTRS is a French pharmaceutical company with a strong and growing international presence.”

Source: RevenueBase Database · checked Sep 21, 2026
14Strong evidencePuteaux, FranceHQ checked Sep 21, 20261-102 contacts →

Strong evidence

“The Foundation promotes the accurate diagnosis and care of patients affected by a rare disease.”

Source: RevenueBase Database · checked Sep 21, 2026
15Indirect evidenceMarseille, FranceHQ checked Sep 21, 202651-2001 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, 2026

Showing 15 of 72 rare disease organizations based in France

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Rare disease organizations based in France at a glance

As of Sep 21, 2026
30.3%Verified-email coverage
21.7Average contacts per company
1-10Median size (employees)
29.2%Largest-city concentration · Paris
Sep 21, 2026Page data refreshed

Companies by employee count

1-10
48
11-50
14
51-200
6
201-500
3
501-1,000
1

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 72 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 France 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 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, 473 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 France?

RevenueBase identified 72 rare disease 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 organizations?

Paris leads with 21 headquartered companies, followed by Puteaux (4) and Lyon (3).

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 473 verified decision-maker contacts tracked across these 72 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.