Company lists · Data refreshed September 2026

Top 15 Genetic disease support groups based in the United States

RevenueBase identified 27 genetic disease support groups headquartered in the United States as of September 2026 and tracks 555 professional contacts across them, including 291 with verified work emails. New York is the largest hub.

This list covers genetic disease support groups headquartered in the United States, 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.

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 20, 2026 86% judged on-target in blind review
27Companies
555Contacts tracked
291Verified emails
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The 15 largest genetic disease support groups based in the United States

Ranked by team size
Top 15 of 27 genetic disease support groups based in the United States, ranked by team size, largest first. Data refreshed Sep 20, 2026. RevenueBase Smart Search rates how each company's information relates to genetic disease support groups: 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 evidenceGreenwood, SC, United StatesHQ checked Sep 20, 202651-200177 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, 2026
2Partial evidenceDanbury, CT, United StatesHQ checked Sep 20, 202651-200156 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, 2026
3Indirect evidenceSouth San Francisco, CA, United StatesHQ checked Sep 20, 202651-20084 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, 2026
4Strong evidenceDowney, CA, United StatesHQ checked Sep 20, 202651-20031 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, 2026
5Partial evidenceWashington, DC, United StatesHQ checked Sep 20, 202611-5030 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, 2026
6Strong evidenceOrange, CA, United StatesHQ checked Sep 20, 20261-1011 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, 2026
7Partial evidenceNew York, NY, United StatesHQ checked Sep 20, 202611-5010 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, 2026
8Strong evidenceWorcester, MA, United StatesHQ checked Sep 20, 20261-109 contacts →

Strong evidence

“Accelerating Genetic Disease Diagnosis via Education and Testing.”

Source: RevenueBase Database · checked Sep 20, 2026
9Strong evidenceBoston, MA, United StatesHQ checked Sep 20, 20261-108 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, 2026
10Strong evidenceAustin, United StatesHQ checked Sep 20, 20261-107 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, 2026
11Strong evidenceBethesda, MD, United StatesHQ checked Sep 20, 202611-505 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, 2026
12Indirect evidencePittsburgh, PA, United StatesHQ checked Sep 20, 20261-103 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, 2026
13Strong evidenceNewtown Square, PA, United StatesHQ checked Sep 20, 20261-103 contacts →

Strong evidence

“Hereditary Disease Circle is an effort to bring out genetic treatments and cures faster.”

Source: RevenueBase Database · checked Sep 20, 2026
14Partial evidenceSudbury, MA, United StatesHQ checked Sep 20, 20261-102 contacts →

Partial evidence

“The ThinkGenetic Foundation is a Non-Profit 501(c)3 established in 2016 to improve the quality of life for those living with or at risk for a genetic condition through education…”

Source: RevenueBase Database · checked Sep 20, 2026
15Indirect evidenceBoca Raton, FL, United StatesHQ checked Sep 20, 20261-101 contacts →

Indirect evidence

“Join us as we celebrate the 25th Anniversary Celebration of the Mathew Forbes Romer Foundation.”

Source: RevenueBase Database · checked Sep 20, 2026

Showing 15 of 27 genetic disease support groups based in the United States

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Genetic disease support groups based in the United States at a glance

As of Sep 20, 2026
52.4%Verified-email coverage
20.6Average contacts per company
1-10Median size (employees)
7.4%Largest-city concentration · New York
Sep 20, 2026Page data refreshed

Companies by employee count

1-10
19
11-50
4
51-200
4

Email recency for this list is measured worldwide rather than for United States, so it is reported there. Company counts and contact totals on this page are exact for United States, over 27 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 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.
What qualifies
Companies headquartered in the United States 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. Companies headquartered outside United States 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, 291 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.

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 based in the United States?

RevenueBase identified 27 genetic disease support groups headquartered in the United States 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?

Greenwood Genetic Center, headquartered in Greenwood, tops this list with the largest team on record.

Which city has the most genetic disease support groups?

New York leads with 2 headquartered companies, followed by Atlanta (1) and Austin (1).

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 291 verified decision-maker contacts tracked across these 27 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.