Company lists · Data refreshed September 2026
Top 25 Rare disease nonprofits based in the United States
RevenueBase identified 210 company matches for rare disease nonprofits associated with the United States as of September 2026 and tracks 2,108 professional contacts across them, including 781 with verified work emails. Washington is the largest hub.
This list covers company matches for rare disease nonprofits associated with the United States, 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.
The 25 largest rare disease nonprofits based in the United States
Ranked by team size| # | Company | Contacts | |||
|---|---|---|---|---|---|
| 1 | 185 contacts → | ||||
Exact match Recorded description not available. Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 2 | 168 contacts → | ||||
Exact match “Bionews is a digital health solutions company dedicated to empowering more than 50 rare disease communities with trusted information, news, and connections.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 3 | 156 contacts → | ||||
Exact match “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…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 4 | 81 contacts → | ||||
Exact match “The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 5 | 67 contacts → | ||||
Exact match “Leading with purpose.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 6 | 63 contacts → | ||||
Exact match “This is a time of great hope for individuals with complex diseases such as NF1 and their families.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 7 | 48 contacts → | ||||
Exact match “Uplifting Athletes, a nonprofit organization founded in 2007, harnesses the power of sport to build a community that invests in the lives of people impacted by rare diseases.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 8 | 46 contacts → | ||||
Exact match “Accessia Health is a national nonprofit 501(c)(3) organization that provides programs and services to those living with rare or chronic health conditions.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 9 | 39 contacts → | ||||
Exact match “Empowering the Next Generation Rare Disease Advocate.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 10 | 36 contacts → | ||||
Exact match “TPIRC is a non-profit clinical care and research center that focuses on the development of cutting-edge, individualized treatment protocols for rare and orphan diseases utilizing…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 11 | 31 contacts → | ||||
Exact match “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.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 12 | 28 contacts → | ||||
Exact match “New advanced medicines are curing patients of serious diseases.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 13 | 21 contacts → | ||||
Exact match “Indo US Organization for rare diseases (IndoUSrare) is an independent non-profit organization focused on helping patients with rare diseases of Indian origin in the USA, India, &…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 14 | 19 contacts → | ||||
Exact match “Probably Genetic helps undiagnosed rare disease patients find answers to their symptoms in a matter of weeks.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 15 | 19 contacts → | ||||
Exact match “The Isabella Santos Foundation (ISF), a 501(c)3, is dedicated to fueling change in rare pediatric cancer.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 16 | 18 contacts → | ||||
Exact match “Mahzi is focused on treating under-served rare genetic neurodevelopmental disorders.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 17 | 15 contacts → | ||||
Exact match “Our mission is to improve the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and direct investment in research.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 18 | 15 contacts → | ||||
Exact match “The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 19 | 15 contacts → | ||||
Exact match “The Rare Cancer Research Foundation is a 501(c)3 nonprofit organization dedicated to curing rare cancers through strategic investments and innovative collaborations that…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 20 | 14 contacts → | ||||
Exact match “The Kelsey Research Foundation (KRF) was established on December 15, 1956, by several physicians of the Kelsey-Seybold Clinic, including John R.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 21 | 14 contacts → | ||||
Exact match “MISSION To catalyze new treatments-and ultimately a cure-for LAM by advancing research, supporting compassionate care, and amplifying the voice of women with rare diseases.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 22 | 14 contacts → | ||||
Exact match “Vanscoy Rare delivers hope, accelerates access and improves the outlook for people living with rare conditions.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 23 | 14 contacts → | ||||
Exact match “Generation Patient facilitates events, online programs, and advocacy initiatives for young adults living with chronic and rare conditions to ensure that they have the…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 24 | 13 contacts → | ||||
Exact match “Our Mission To improve the lives of individuals with peroxisomal disorders by funding research, championing scientific collaboration, and empowering families and professionals…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 25 | 11 contacts → | ||||
Exact match “The Desmoid Tumor Research Foundation (DTRF) is a nonprofit organization responsible for sparking the desmoid tumor research movement that has now grown into a thriving global…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
RevenueBase SmartSearch
Describe a niche business in your own words. RevenueBase SmartSearch compares the meaning of your description with company business descriptions compiled in the RevenueBase company graph. Exact, Similar, Related and Broad control how closely companies must fit.
This list uses Exact for “rare disease nonprofits”. Each Exact match badge shows membership in that saved search; it is not an individual similarity score or a service-quality rating. Recorded descriptions are shown where available.
Showing 25 of 210 rare disease nonprofits based in the United States
See the full list, filter by size, metro and specialty, and access 781 tracked professional contacts with verified work emails. Direct dials are available where recorded.
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Rare disease nonprofits based in the United States at a glance
As of Sep 21, 2026Companies by employee count
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 210 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 States whose business descriptions match “rare disease nonprofits” 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 781 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 nonprofits”; each Exact match badge shows search membership, not an individual similarity or quality score.
How many rare disease nonprofits are there based in the United States?
RevenueBase identified 210 company matches for rare disease nonprofits associated with the United States 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?
Catalyst Pharmaceuticals, INC tops the displayed preview by professional contacts tracked in RevenueBase. Recorded headquarters appear in the company rows.
Which city has the most rare disease nonprofits?
Washington leads with 12 company records, followed by New York (9) and Austin (8).
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 781 professional contacts with verified work emails tracked across these 210 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.
Ready to reach these companies? Verified emails and direct dials for all 210 rare disease nonprofits based in the United States. Start with a free account, no credit card.
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Rare disease nonprofits by geography
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.
More company lists
- All company lists
- Lists by location
- Lists A-Z
- New lists
- Rare disease nonprofits based in France
- Rare disease nonprofits based in the United Kingdom
- AI companies based in the United States
- Cybersecurity companies based in the United States
- Manufacturing companies based in the United States
- Media companies based in the United States
Company intelligence · public preview
Top 25 rare disease nonprofits based in the United States
Find companies in any niche.
Describe the businesses you want in your own words. RevenueBase SmartSearch matches company descriptions by meaning.
RevenueBase records 210 matching company records for rare disease nonprofits based in the United States, with 2,108 tracked contacts and 781 verified work emails.
This public preview shows 25 selected records ordered by tracked contacts. RevenueBase SmartSearch finds company descriptions that match by meaning at Exact. Snapshot: September 21, 2026.
RevenueBase compiles business descriptions for niche-company discovery; each row shows a recorded excerpt where available. Adapt this search to find the companies and contacts you want.
Top 25 rare disease nonprofits based in the United States
The public list shows selected company records with contact and verified-email coverage. Reported employee bands provide separate company-size context.
| # | Company | Headquarters on record | Reported employees | RevenueBase SmartSearch | Tracked contacts |
|---|---|---|---|---|---|
| 1 | Catalyst Pharmaceuticals, INCcatalystpharma.com HQ: Coral Gables, FL, United StatesReported employees: 51-200 | Coral Gables, FL, United States | 51-200 | Exact match | 185 contacts → |
No recorded description excerpt is available for this public record. | |||||
| 2 | Bionews, INCbionews.com HQ: Pensacola, FL, United StatesReported employees: 51-200 | Pensacola, FL, United States | 51-200 | Exact match | 168 contacts → |
“Bionews is a digital health solutions company dedicated to empowering more than 50 rare disease communities with trusted information, news, and connections.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 3 | National Organization For Rare Disordersrarediseases.org HQ: Danbury, CT, United StatesReported employees: 51-200 | Danbury, CT, United States | 51-200 | Exact match | 156 contacts → |
“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…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 4 | Everylife Foundation For Rare Diseaseseverylifefoundation.org HQ: Washington, DC, United StatesReported employees: 11-50 | Washington, DC, United States | 11-50 | Exact match | 81 contacts → |
“The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 5 | Ultragenyxultragenyx.com HQ: Novato, CA, United StatesReported employees: 1,001-5,000 | Novato, CA, United States | 1,001-5,000 | Exact match | 67 contacts → |
“Leading with purpose.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 6 | Ihealth And Wellness Foundation, INCihealthwellness.org HQ: New York, NY, United StatesReported employees: 11-50 | New York, NY, United States | 11-50 | Exact match | 63 contacts → |
“This is a time of great hope for individuals with complex diseases such as NF1 and their families.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 7 | Uplifting Athletesupliftingathletes.org HQ: Philadelphia, PA, United StatesReported employees: Not recorded | Philadelphia, PA, United States | Not recorded | Exact match | 48 contacts → |
“Uplifting Athletes, a nonprofit organization founded in 2007, harnesses the power of sport to build a community that invests in the lives of people impacted by rare diseases.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 8 |  Accessia Healthaccessiahealth.orgHQ: Midlothian, VA, United StatesReported employees: 11-50 | Midlothian, VA, United States | 11-50 | Exact match | 46 contacts → |
“Accessia Health is a national nonprofit 501(c)(3) organization that provides programs and services to those living with rare or chronic health conditions.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 9 | Global Genesglobalgenes.org HQ: Washington, United StatesReported employees: 11-50 | Washington, United States | 11-50 | Exact match | 39 contacts → |
“Empowering the Next Generation Rare Disease Advocate.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 10 | HQ: Long Beach, CA, United StatesReported employees: 51-200 | Long Beach, CA, United States | 51-200 | Exact match | 36 contacts → |
“TPIRC is a non-profit clinical care and research center that focuses on the development of cutting-edge, individualized treatment protocols for rare and orphan diseases utilizing…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 11 | Rare Genomics Instituteraregenomics.org HQ: Downey, CA, United StatesReported employees: 51-200 | Downey, CA, United States | 51-200 | Exact match | 31 contacts → |
“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.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 12 | Caring Crosscaringcross.org HQ: Washington, DC, United StatesReported employees: 11-50 | Washington, DC, United States | 11-50 | Exact match | 28 contacts → |
“New advanced medicines are curing patients of serious diseases.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 13 | Indo US Organization For Rare Diseases Indousrareindousrare.org HQ: Herndon, VA, United StatesReported employees: 11-50 | Herndon, VA, United States | 11-50 | Exact match | 21 contacts → |
“Indo US Organization for rare diseases (IndoUSrare) is an independent non-profit organization focused on helping patients with rare diseases of Indian origin in the USA, India, &…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 14 | Probably Geneticprobablygenetic.com HQ: San Francisco, CA, United StatesReported employees: 11-50 | San Francisco, CA, United States | 11-50 | Exact match | 19 contacts → |
“Probably Genetic helps undiagnosed rare disease patients find answers to their symptoms in a matter of weeks.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 15 | Isabella Santos Foundationisabellasantosfoundation.org HQ: Charlotte, NC, United StatesReported employees: 1-10 | Charlotte, NC, United States | 1-10 | Exact match | 19 contacts → |
“The Isabella Santos Foundation (ISF), a 501(c)3, is dedicated to fueling change in rare pediatric cancer.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 16 | Mahzi Therapeuticsmahzi.com HQ: San Francisco, United StatesReported employees: 11-50 | San Francisco, United States | 11-50 | Exact match | 18 contacts → |
“Mahzi is focused on treating under-served rare genetic neurodevelopmental disorders.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 17 |  Alport Syndrome Foundationalportsyndrome.orgHQ: Scottsdale, AZ, United StatesReported employees: 1-10 | Scottsdale, AZ, United States | 1-10 | Exact match | 15 contacts → |
“Our mission is to improve the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and direct investment in research.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 18 | Histiocytosis Associationhistio.org HQ: Pitman, NJ, United StatesReported employees: 1-10 | Pitman, NJ, United States | 1-10 | Exact match | 15 contacts → |
“The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 19 | Rare Cancer Research Foundationrarecancer.org HQ: Durham, NC, United StatesReported employees: 1-10 | Durham, NC, United States | 1-10 | Exact match | 15 contacts → |
“The Rare Cancer Research Foundation is a 501(c)3 nonprofit organization dedicated to curing rare cancers through strategic investments and innovative collaborations that…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 20 | Kelsey Research Foundationkelseyresearch.com HQ: Houston, TX, United StatesReported employees: 11-50 | Houston, TX, United States | 11-50 | Exact match | 14 contacts → |
“The Kelsey Research Foundation (KRF) was established on December 15, 1956, by several physicians of the Kelsey-Seybold Clinic, including John R.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 21 | The LAM Foundationthelamfoundation.org HQ: Cincinnati, OH, United StatesReported employees: 1-10 | Cincinnati, OH, United States | 1-10 | Exact match | 14 contacts → |
“MISSION To catalyze new treatments-and ultimately a cure-for LAM by advancing research, supporting compassionate care, and amplifying the voice of women with rare diseases.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 22 | Vanscoy Rare Pharmacyvanscoyrare.com HQ: Pittsburgh, PA, United StatesReported employees: 51-200 | Pittsburgh, PA, United States | 51-200 | Exact match | 14 contacts → |
“Vanscoy Rare delivers hope, accelerates access and improves the outlook for people living with rare conditions.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 23 | Generation Patientgenerationpatient.org HQ: Indianapolis, IN, United StatesReported employees: 1-10 | Indianapolis, IN, United States | 1-10 | Exact match | 14 contacts → |
“Generation Patient facilitates events, online programs, and advocacy initiatives for young adults living with chronic and rare conditions to ensure that they have the…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 24 | HQ: Tulsa, OK, United StatesReported employees: 1-10 | Tulsa, OK, United States | 1-10 | Exact match | 13 contacts → |
“Our Mission To improve the lives of individuals with peroxisomal disorders by funding research, championing scientific collaboration, and empowering families and professionals…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 25 | HQ: Philadelphia, United StatesReported employees: 1-10 | Philadelphia, United States | 1-10 | Exact match | 11 contacts → |
“The Desmoid Tumor Research Foundation (DTRF) is a nonprofit organization responsible for sparking the desmoid tumor research movement that has now grown into a thriving global…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
Showing 25 of 210 company matches
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Rare disease nonprofits: dataset insights
September 21, 2026These summaries describe recorded coverage in this saved dataset. This page is derived from saved source records; per-contact mobile coverage and email-recency results are not established by this snapshot.
Reported company sizes
210 records in the displayed employee bands.
0 matching records are outside the displayed bands or do not have a displayed size. Bars show shares of the displayed bands.
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 210 companies.
How this company list was built
Describe a niche in your own words: companies installing commercial solar, or manufacturers of sustainable packaging. RevenueBase SmartSearch finds companies whose compiled business descriptions match by meaning. This list is one saved example to adapt.
Where the company descriptions come from
RevenueBase compiles company information from public sources, including company websites and public professional profiles such as LinkedIn, alongside information supplied by companies. The short recorded excerpt shown here is separate from the complete business description used for matching; individual source URLs and collection dates are not provided in this public snapshot.
RevenueBase SmartSearch matching settings
- Exact
- Closest fits to the business described.
- Similar
- Similar businesses with a wider range of fits.
- Related
- Related businesses in and around the category.
- Broad
- A broader set of businesses connected to the description.
RevenueBase SmartSearch · Exact match identifies inclusion in this search's closest semantic matching setting. It is not a per-company confidence score, a literal keyword match, or a quality endorsement.
Selection, ordering and scope
The public list shows selected company records with contact and verified-email coverage. Reported employee bands provide separate company-size context.
This page is derived from saved source records; per-contact mobile coverage and email-recency results are not established by this snapshot.
Recorded company descriptions support research; check company websites for current services. The selected preview is ordered by tracked contacts and is not a list of the best service providers.
Snapshot: September 21, 2026.
RevenueBase is a B2B data infrastructure company. Its September 3, 2026 published methodology describes a graph of 60 million companies and 398.9 million professional contacts; these platform figures differ from this page's totals. Published methodology ↗
Questions about this company list
What does Exact match mean for rare disease nonprofits?
The separate RevenueBase SmartSearch column identifies inclusion at the closest semantic matching preset. It is not a literal keyword match, a per-company confidence score or a quality endorsement. Changing the search form opens a new search in RevenueBase; it does not reclassify these saved rows.
How many rare disease nonprofits did RevenueBase find based in the United States?
The saved snapshot records 210 matching company records, 2,108 tracked contacts and 781 verified emails. The public preview displays 25 selected records.
Where do the company descriptions come from?
RevenueBase compiles company information from public sources, including company websites and public professional profiles such as LinkedIn, alongside information supplied by companies. The short recorded excerpt shown here is separate from the complete business description used for matching; individual source URLs and collection dates are not provided in this public snapshot.
How are the public companies ordered?
The selected public records are ordered by contacts tracked in RevenueBase, highest first. Contact coverage is a prospecting measure, not an assessment of the company's services or quality.
How can I get contact information?
Select a company's contact count to open its filtered contacts in RevenueBase. Free signup is required and includes 500 credits and limited free results. Verified emails, direct dials and mobile numbers depend on available coverage.
How current is this list?
Snapshot: September 21, 2026. Review each company's website for current services and locations. A recorded business description does not establish that every company offers every service named in the search.
What do headquarters and employee bands mean?
These are recorded company-level fields, rather than a map of every branch or a count of specialists. Missing headquarters or employee bands are labeled; older records may show a location separately from recorded headquarters.
Build your next target company list
Adapt this niche search and work with available contacts in RevenueBase.
Related lists
Rare disease nonprofits by geography
Cite this list
RevenueBase Data Team. Top 25 rare disease nonprofits based in the United States. Snapshot: September 21, 2026. https://revenuebase.ai/companies/rare-disease-nonprofits/united-states.
This is a selected public preview of saved company records, rather than an independently verified census. Open the source page ↗
More company lists
- All company lists
- Lists by location
- Lists A-Z
- New lists
- Rare disease nonprofits based in France
- Rare disease nonprofits based in the United Kingdom
- AI companies based in the United States
- Cybersecurity companies based in the United States
- Manufacturing companies based in the United States
- Media companies based in the United States
Company intelligence · public preview
Top 25 rare disease nonprofits based in the United States
RevenueBase records 210 matching company records for rare disease nonprofits based in the United States, with 2,108 tracked contacts and 781 verified work emails.
This public preview shows 25 selected records ordered by tracked contacts. RevenueBase SmartSearch finds company descriptions that match by meaning at Exact. Snapshot: September 21, 2026.
RevenueBase compiles business descriptions for niche-company discovery; each row shows a recorded excerpt where available. Adapt this search to find the companies and contacts you want.
Top 25 rare disease nonprofits based in the United States
The public list shows selected company records with contact and verified-email coverage. Reported employee bands provide separate company-size context.
| # | Company | Headquarters on record | Reported employees | RevenueBase SmartSearch | Tracked contacts |
|---|---|---|---|---|---|
| 1 | Catalyst Pharmaceuticals, INCcatalystpharma.com HQ: Coral Gables, FL, United StatesReported employees: 51-200 | Coral Gables, FL, United States | 51-200 | Exact match | 185 contacts → |
No recorded description excerpt is available for this public record. | |||||
| 2 | Bionews, INCbionews.com HQ: Pensacola, FL, United StatesReported employees: 51-200 | Pensacola, FL, United States | 51-200 | Exact match | 168 contacts → |
“Bionews is a digital health solutions company dedicated to empowering more than 50 rare disease communities with trusted information, news, and connections.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 3 | National Organization For Rare Disordersrarediseases.org HQ: Danbury, CT, United StatesReported employees: 51-200 | Danbury, CT, United States | 51-200 | Exact match | 156 contacts → |
“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…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 4 | Everylife Foundation For Rare Diseaseseverylifefoundation.org HQ: Washington, DC, United StatesReported employees: 11-50 | Washington, DC, United States | 11-50 | Exact match | 81 contacts → |
“The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 5 | Ultragenyxultragenyx.com HQ: Novato, CA, United StatesReported employees: 1,001-5,000 | Novato, CA, United States | 1,001-5,000 | Exact match | 67 contacts → |
“Leading with purpose.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 6 | Ihealth And Wellness Foundation, INCihealthwellness.org HQ: New York, NY, United StatesReported employees: 11-50 | New York, NY, United States | 11-50 | Exact match | 63 contacts → |
“This is a time of great hope for individuals with complex diseases such as NF1 and their families.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 7 | Uplifting Athletesupliftingathletes.org HQ: Philadelphia, PA, United StatesReported employees: Not recorded | Philadelphia, PA, United States | Not recorded | Exact match | 48 contacts → |
“Uplifting Athletes, a nonprofit organization founded in 2007, harnesses the power of sport to build a community that invests in the lives of people impacted by rare diseases.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 8 | Accessia Healthaccessiahealth.org HQ: Midlothian, VA, United StatesReported employees: 11-50 | Midlothian, VA, United States | 11-50 | Exact match | 46 contacts → |
“Accessia Health is a national nonprofit 501(c)(3) organization that provides programs and services to those living with rare or chronic health conditions.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 9 | Global Genesglobalgenes.org HQ: Washington, United StatesReported employees: 11-50 | Washington, United States | 11-50 | Exact match | 39 contacts → |
“Empowering the Next Generation Rare Disease Advocate.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 10 | HQ: Long Beach, CA, United StatesReported employees: 51-200 | Long Beach, CA, United States | 51-200 | Exact match | 36 contacts → |
“TPIRC is a non-profit clinical care and research center that focuses on the development of cutting-edge, individualized treatment protocols for rare and orphan diseases utilizing…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 11 | Rare Genomics Instituteraregenomics.org HQ: Downey, CA, United StatesReported employees: 51-200 | Downey, CA, United States | 51-200 | Exact match | 31 contacts → |
“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.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 12 | Caring Crosscaringcross.org HQ: Washington, DC, United StatesReported employees: 11-50 | Washington, DC, United States | 11-50 | Exact match | 28 contacts → |
“New advanced medicines are curing patients of serious diseases.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 13 | Indo US Organization For Rare Diseases Indousrareindousrare.org HQ: Herndon, VA, United StatesReported employees: 11-50 | Herndon, VA, United States | 11-50 | Exact match | 21 contacts → |
“Indo US Organization for rare diseases (IndoUSrare) is an independent non-profit organization focused on helping patients with rare diseases of Indian origin in the USA, India, &…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 14 | Probably Geneticprobablygenetic.com HQ: San Francisco, CA, United StatesReported employees: 11-50 | San Francisco, CA, United States | 11-50 | Exact match | 19 contacts → |
“Probably Genetic helps undiagnosed rare disease patients find answers to their symptoms in a matter of weeks.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 15 | Isabella Santos Foundationisabellasantosfoundation.org HQ: Charlotte, NC, United StatesReported employees: 1-10 | Charlotte, NC, United States | 1-10 | Exact match | 19 contacts → |
“The Isabella Santos Foundation (ISF), a 501(c)3, is dedicated to fueling change in rare pediatric cancer.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 16 | Mahzi Therapeuticsmahzi.com HQ: San Francisco, United StatesReported employees: 11-50 | San Francisco, United States | 11-50 | Exact match | 18 contacts → |
“Mahzi is focused on treating under-served rare genetic neurodevelopmental disorders.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 17 | Alport Syndrome Foundationalportsyndrome.org HQ: Scottsdale, AZ, United StatesReported employees: 1-10 | Scottsdale, AZ, United States | 1-10 | Exact match | 15 contacts → |
“Our mission is to improve the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and direct investment in research.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 18 | Histiocytosis Associationhistio.org HQ: Pitman, NJ, United StatesReported employees: 1-10 | Pitman, NJ, United States | 1-10 | Exact match | 15 contacts → |
“The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 19 | Rare Cancer Research Foundationrarecancer.org HQ: Durham, NC, United StatesReported employees: 1-10 | Durham, NC, United States | 1-10 | Exact match | 15 contacts → |
“The Rare Cancer Research Foundation is a 501(c)3 nonprofit organization dedicated to curing rare cancers through strategic investments and innovative collaborations that…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 20 | Kelsey Research Foundationkelseyresearch.com HQ: Houston, TX, United StatesReported employees: 11-50 | Houston, TX, United States | 11-50 | Exact match | 14 contacts → |
“The Kelsey Research Foundation (KRF) was established on December 15, 1956, by several physicians of the Kelsey-Seybold Clinic, including John R.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 21 | The LAM Foundationthelamfoundation.org HQ: Cincinnati, OH, United StatesReported employees: 1-10 | Cincinnati, OH, United States | 1-10 | Exact match | 14 contacts → |
“MISSION To catalyze new treatments-and ultimately a cure-for LAM by advancing research, supporting compassionate care, and amplifying the voice of women with rare diseases.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 22 | Vanscoy Rare Pharmacyvanscoyrare.com HQ: Pittsburgh, PA, United StatesReported employees: 51-200 | Pittsburgh, PA, United States | 51-200 | Exact match | 14 contacts → |
“Vanscoy Rare delivers hope, accelerates access and improves the outlook for people living with rare conditions.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 23 | Generation Patientgenerationpatient.org HQ: Indianapolis, IN, United StatesReported employees: 1-10 | Indianapolis, IN, United States | 1-10 | Exact match | 14 contacts → |
“Generation Patient facilitates events, online programs, and advocacy initiatives for young adults living with chronic and rare conditions to ensure that they have the…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 24 | HQ: Tulsa, OK, United StatesReported employees: 1-10 | Tulsa, OK, United States | 1-10 | Exact match | 13 contacts → |
“Our Mission To improve the lives of individuals with peroxisomal disorders by funding research, championing scientific collaboration, and empowering families and professionals…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 25 | HQ: Philadelphia, United StatesReported employees: 1-10 | Philadelphia, United States | 1-10 | Exact match | 11 contacts → |
“The Desmoid Tumor Research Foundation (DTRF) is a nonprofit organization responsible for sparking the desmoid tumor research movement that has now grown into a thriving global…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
Showing 25 of 210 company matches
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Rare disease nonprofits: dataset insights
September 21, 2026These summaries describe recorded coverage in this saved dataset. This page is derived from saved source records; per-contact mobile coverage and email-recency results are not established by this snapshot.
Reported company sizes
210 records in the displayed employee bands.
0 matching records are outside the displayed bands or do not have a displayed size. Bars show shares of the displayed bands.
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 210 companies.
How this company list was built
Describe a niche in your own words: companies installing commercial solar, or manufacturers of sustainable packaging. RevenueBase SmartSearch finds companies whose compiled business descriptions match by meaning. This list is one saved example to adapt.
Where the company descriptions come from
RevenueBase compiles company information from public sources, including company websites and public professional profiles such as LinkedIn, alongside information supplied by companies. The short recorded excerpt shown here is separate from the complete business description used for matching; individual source URLs and collection dates are not provided in this public snapshot.
RevenueBase SmartSearch matching settings
- Exact
- Closest fits to the business described.
- Similar
- Similar businesses with a wider range of fits.
- Related
- Related businesses in and around the category.
- Broad
- A broader set of businesses connected to the description.
RevenueBase SmartSearch · Exact match identifies inclusion in this search's closest semantic matching setting. It is not a per-company confidence score, a literal keyword match, or a quality endorsement.
Selection, ordering and scope
The public list shows selected company records with contact and verified-email coverage. Reported employee bands provide separate company-size context.
This page is derived from saved source records; per-contact mobile coverage and email-recency results are not established by this snapshot.
Recorded company descriptions support research; check company websites for current services. The selected preview is ordered by tracked contacts and is not a list of the best service providers.
Snapshot: September 21, 2026.
RevenueBase is a B2B data infrastructure company. Its September 3, 2026 published methodology describes a graph of 60 million companies and 398.9 million professional contacts; these platform figures differ from this page's totals. Published methodology ↗
Questions about this company list
What does Exact match mean for rare disease nonprofits?
The separate RevenueBase SmartSearch column identifies inclusion at the closest semantic matching preset. It is not a literal keyword match, a per-company confidence score or a quality endorsement. Changing the search form opens a new search in RevenueBase; it does not reclassify these saved rows.
How many rare disease nonprofits did RevenueBase find based in the United States?
The saved snapshot records 210 matching company records, 2,108 tracked contacts and 781 verified emails. The public preview displays 25 selected records.
Where do the company descriptions come from?
RevenueBase compiles company information from public sources, including company websites and public professional profiles such as LinkedIn, alongside information supplied by companies. The short recorded excerpt shown here is separate from the complete business description used for matching; individual source URLs and collection dates are not provided in this public snapshot.
How are the public companies ordered?
The selected public records are ordered by contacts tracked in RevenueBase, highest first. Contact coverage is a prospecting measure, not an assessment of the company's services or quality.
How can I get contact information?
Select a company's contact count to open its filtered contacts in RevenueBase. Free signup is required and includes 500 credits and limited free results. Verified emails, direct dials and mobile numbers depend on available coverage.
How current is this list?
Snapshot: September 21, 2026. Review each company's website for current services and locations. A recorded business description does not establish that every company offers every service named in the search.
What do headquarters and employee bands mean?
These are recorded company-level fields, rather than a map of every branch or a count of specialists. Missing headquarters or employee bands are labeled; older records may show a location separately from recorded headquarters.
Build your next target company list
Adapt this niche search and work with available contacts in RevenueBase.
Related lists
Rare disease nonprofits by geography
Cite this list
RevenueBase Data Team. Top 25 rare disease nonprofits based in the United States. Snapshot: September 21, 2026. https://revenuebase.ai/companies/rare-disease-nonprofits/united-states.
This is a selected public preview of saved company records, rather than an independently verified census. Open the source page ↗
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