Company lists · Data refreshed September 2026
Top 25 Genetic disease support groups worldwide
RevenueBase identified 98 genetic disease support groups worldwide as of September 2026 and tracks 1,365 professional contacts across them, including 652 with verified work emails. The United States is the largest market and Dubai the largest hub.
This list covers genetic disease support groups worldwide, 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 20, 2026. Country and city lists for genetic disease support groups follow the table.
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 25 largest genetic disease support groups worldwide
Ranked by team size| # | Company | Contacts | |||
|---|---|---|---|---|---|
| 1 | 571 contacts → | ||||
Indirect 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 20, 2026Thanks. The Data Team will review it. | |||||
| 2 | 177 contacts → | ||||
Partial evidence “For 50 years, the Greenwood Genetic Center has provided clinical genetic services, diagnostic laboratory testing, educational programs and resources, and medical genetics research…” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 3 | 156 contacts → | ||||
Partial evidence “The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases…” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 4 | 84 contacts → | ||||
Indirect evidence “Our mission is to bridge critical gaps in access, ensuring that individuals and families affected by rare conditions receive the expert guidance they need.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 5 | 31 contacts → | ||||
Strong evidence “Rare Genomics Institute (RG) was founded in 2011 to fill the health care gap for undiagnosed rare disease patients and supporting research in rare diseases.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 6 | 30 contacts → | ||||
Partial evidence “Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered…” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 7 | 19 contacts → | ||||
Strong 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 20, 2026Thanks. The Data Team will review it. | |||||
| 8 | 19 contacts → | ||||
Strong evidence “Jnetics was established to raise awareness of Jewish genetic disorders and to help anyone affected and at risk to access the best information, services and support available.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 9 | 15 contacts → | ||||
Partial evidence “De VSOP is belangenbehartiger voor alle mensen met een zeldzame of genetische aandoening.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 10 | 11 contacts → | ||||
Strong evidence “Raregivers™ is a global network that delivers emotional support to caregivers, patients and professionals in rare, chronic and complex disease communities.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 11 | 10 contacts → | ||||
Partial evidence “At Know Rare, we aim to connect people living with rare diseases to information about their conditions as well as to specialists, clinical studies, advocacy organizations, and…” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 12 | 9 contacts → | ||||
Strong evidence “Accelerating Genetic Disease Diagnosis via Education and Testing.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 13 | 8 contacts → | ||||
Partial evidence “LeadPath Healthcare Innovations – Navigating the Path Less Taken in Rare Disease Care LeadPath Healthcare Innovations is a purpose-driven organization on a mission to transform…” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 14 | 8 contacts → | ||||
Indirect evidence “SWAN is a not for profit charity and incorporated association.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 15 | 8 contacts → | ||||
Strong evidence “The Genesis Foundation for Children provides funding for the diagnosis and compassionate, coordinated care of children born with genetic disorders, rare diseases, and disabilities.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 16 | 7 contacts → | ||||
Strong evidence “BensFriends.org is a network of safe and supportive patient communities for anyone affected by a rare disease.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 17 | 5 contacts → | ||||
Indirect evidence “There are so many patients in advocacy groups worldwide who are full of energy, commitment and will to improve other people’s lives.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 18 | 5 contacts → | ||||
Strong evidence “The ACMG Foundation for Genetic and Genomic Medicine, a 501(c)(3) nonprofit organization, is a community of supporters and contributors who understand the importance of medical…” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 19 | 5 contacts → | ||||
Partial evidence “We are a health-focused nonprofit organization that helps individuals and families with hereditary disease, such as cancer risk, in their early detection and prevention efforts.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 20 | 5 contacts → | ||||
Strong evidence “Welcome to Genetic Alliance Australia, a tax-deductible registered charity passionately dedicated to providing support, resources, and a strong community for individuals and…” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 21 | 4 contacts → | ||||
Strong evidence “Gene People is a charity here to support anyone with a genetic condition and their loved ones, and the patient organisations and support groups that work with them.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 22 | 4 contacts → | ||||
Partial evidence “Nonprofit association for people with rare diseases and their famlies” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 23 | 3 contacts → | ||||
Indirect evidence “Gaucher Community Alliance (GCA) is a 501(c)(3) non-profit organization for the patient community by the patient community.” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 24 | 3 contacts → | ||||
Strong evidence “The Genetic Diseases Association (GDA) in the United Arab Emirates is a non-profit organization that provides support, education, and advocacy for individuals and families…” Source: RevenueBase Database · checked Sep 20, 2026Thanks. The Data Team will review it. | |||||
| 25 | 3 contacts → | ||||
Strong evidence “Hereditary Disease Circle is an effort to bring out genetic treatments and cures faster.” Source: RevenueBase Database · checked Sep 20, 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: genetic disease support groups. 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 genetic disease support groups.
- Partial evidence
- Its own public description names part of genetic disease support groups, so it works in or next to the category without describing itself that way.
- Indirect evidence
- The description shown does not name genetic disease support groups. 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 25 of 98 genetic disease support groups worldwide
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Genetic disease support groups worldwide at a glance
As of Sep 20, 2026Companies by employee count
Email recency is reported on each country list linked below.
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 genetic disease support groups, 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.
- Coverage
- Every country. Country and city lists for genetic disease support groups are linked below.
- What qualifies
- Companies worldwide whose own description of what they do matches “genetic disease support groups”. 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 genetic disease support groups), 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 genetic disease support groups, and records with no verified work email.
- 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, 652 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 20, 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.
Genetic disease support groups by location
1 lists · largest firstEvery Genetic disease support groups list RevenueBase publishes, by country and city. Counts are matching companies in each list as of its own refresh date.
Countries
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 genetic disease support groups, 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 genetic disease support groups are there worldwide?
RevenueBase identified 98 genetic disease support groups worldwide 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 country has the most genetic disease support groups?
The United States leads with 27 companies. Every genetic disease support groups list by country and city is linked on this page.
Which city has the most genetic disease support groups?
Dubai leads with 3 headquartered companies, followed by London (2) and New York (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 652 verified decision-maker contacts tracked across these 98 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 20, 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.