Company lists · Data refreshed September 2026
Top 25 Rare disease nonprofits worldwide
RevenueBase identified 672 company matches for rare disease nonprofits worldwide as of September 2026 and tracks 5,955 professional contacts across them, including 1,935 with verified work emails. The United States is the largest market and Paris the largest hub.
This list covers company matches for rare disease nonprofits worldwide, 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. Country and city lists for rare disease nonprofits follow the table.
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 worldwide
Ranked by team size| # | Company | Contacts | |||
|---|---|---|---|---|---|
| 1 | 571 contacts → | ||||
Exact match “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.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 2 | 409 contacts → | ||||
Exact match “LifeArc® is a self-funded medical research organisation with one clear purpose – transforming the lives of people living with rare diseases and drug-resistant infections.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 3 | 185 contacts → | ||||
Exact match Recorded description not available. Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 4 | 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 | |||||
| 5 | 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 | |||||
| 6 | 118 contacts → | ||||
Exact match “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…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 7 | 110 contacts → | ||||
Exact match “Ågrenska is a national centre of competence for rare diseases and other disabilities.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 8 | 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 | |||||
| 9 | 75 contacts → | ||||
Exact match “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…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 10 | 67 contacts → | ||||
Exact match “Leading with purpose.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 11 | 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 | |||||
| 12 | 53 contacts → | ||||
Exact match “Sobi es una compañía biofarmacéutica internacional que trabaja cada día para ofrecer terapias y servicios innovadores que mejoren la vida de las personas con enfermedades raras y…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 13 | 49 contacts → | ||||
Exact match “La Federación Española de Enfermedades Raras (FEDER) nació en con el objetivo de ser la esperanza de más de tres millones de personas que conviven con estas patologías en nuestro…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 14 | 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 | |||||
| 15 | 48 contacts → | ||||
Exact match “The CIBERER is a cooperative network structure, with 60 research groups located in the main research centres all over Spain.” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 16 | 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 | |||||
| 17 | 42 contacts → | ||||
Exact match “Rare Cancers Australia (RCA) is a leading for-impact charity that works to improve the lives and health outcomes of Australian patients, carers and families affected by a rare or…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 18 | 41 contacts → | ||||
Exact match “A Raríssimas – Associação Nacional de Deficiências Mentais e Raras é uma IPSS, fundada em Abril de 2002, que desenvolve a sua acção junto de doentes e familiares que convivem de…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 19 | 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 | |||||
| 20 | 38 contacts → | ||||
Exact match “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…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 21 | 38 contacts → | ||||
Exact match “Fundación SPINE es una asociación sin fines de lucro que realiza investigación y tratamiento de pacientes con enfermedades raras o poco frecuentes, con el objetivo de mejorar su…” Recorded in the RevenueBase company graph · Sep 21, 2026 · View company records in RevenueBase | |||||
| 22 | 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 | |||||
| 23 | 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 | |||||
| 24 | 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 | |||||
| 25 | 28 contacts → | ||||
Exact match “At Partners4Access, we believe patients with rare diseases deserve the right to access the most appropriate treatment.” 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 672 rare disease nonprofits worldwide
See the full list, filter by size, metro and specialty, and access 1,935 tracked professional contacts with verified work emails. Direct dials are available where recorded.
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Rare disease nonprofits worldwide at a glance
As of Sep 21, 2026Companies by employee count
Email recency is reported on each country list linked below.
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.
- Coverage
- Every country. Country and city lists for rare disease nonprofits are linked below.
- What qualifies
- Company records worldwide 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. 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 1,935 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.
Rare disease nonprofits by location
3 lists · largest firstEvery Rare disease nonprofits 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 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 worldwide?
RevenueBase identified 672 company matches for rare disease nonprofits worldwide 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?
Afm-Téléthon tops the displayed preview by professional contacts tracked in RevenueBase. Recorded headquarters appear in the company rows.
Which country has the most rare disease nonprofits?
The United States leads with 210 companies, followed by France (46) and the United Kingdom (34). Every rare disease nonprofits list by country and city is linked on this page.
Which city has the most rare disease nonprofits?
Paris leads with 16 company records, followed by Washington (12) and Madrid (9).
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 1,935 professional contacts with verified work emails tracked across these 672 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 672 rare disease nonprofits worldwide. Start with a free account, no credit card.
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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 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
Company intelligence · public preview
Top 25 rare disease nonprofits worldwide
Find companies in any niche.
Describe the businesses you want in your own words. RevenueBase SmartSearch matches company descriptions by meaning.
RevenueBase records 672 matching company records for rare disease nonprofits worldwide, with 5,955 tracked contacts and 1,935 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 worldwide
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 |  Afm-Téléthonafm-telethon.frHQ: Evry, FranceReported employees: 201-500 | Evry, France | 201-500 | Exact match | 571 contacts → |
“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.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 2 | Lifearclifearc.org HQ: London, United KingdomReported employees: 201-500 | London, United Kingdom | 201-500 | Exact match | 409 contacts → |
“LifeArc® is a self-funded medical research organisation with one clear purpose – transforming the lives of people living with rare diseases and drug-resistant infections.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 3 | 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. | |||||
| 4 | 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. | |||||
| 5 | 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. | |||||
| 6 | Orphalanorphalan.com HQ: Paris, FranceReported employees: 51-200 | Paris, France | 51-200 | Exact match | 118 contacts → |
“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…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 7 |  Ågrenskaagrenska.seHQ: Hovås, SwedenReported employees: 201-500 | Hovås, Sweden | 201-500 | Exact match | 110 contacts → |
“Ågrenska is a national centre of competence for rare diseases and other disabilities.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 8 | 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. | |||||
| 9 | Eurordis-Rare Diseases Europeeurordis.org HQ: Paris, FranceReported employees: 11-50 | Paris, France | 11-50 | Exact match | 75 contacts → |
“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…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 10 | 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. | |||||
| 11 | 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. | |||||
| 12 | Sobi Iberiasobi.es HQ: Madrid, SpainReported employees: 51-200 | Madrid, Spain | 51-200 | Exact match | 53 contacts → |
“Sobi es una compañía biofarmacéutica internacional que trabaja cada día para ofrecer terapias y servicios innovadores que mejoren la vida de las personas con enfermedades raras y…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 13 | Federación Española DE Enfermedades Rarasenfermedades-raras.org HQ: Madrid, SpainReported employees: 51-200 | Madrid, Spain | 51-200 | Exact match | 49 contacts → |
“La Federación Española de Enfermedades Raras (FEDER) nació en con el objetivo de ser la esperanza de más de tres millones de personas que conviven con estas patologías en nuestro…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 14 | 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. | |||||
| 15 | Ciber Enfermedades Rarasciberer.es HQ: Madrid, SpainReported employees: 51-200 | Madrid, Spain | 51-200 | Exact match | 48 contacts → |
“The CIBERER is a cooperative network structure, with 60 research groups located in the main research centres all over Spain.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 16 |  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. | |||||
| 17 | Rare Cancers Australiararecancers.org.au HQ: Sydney, AustraliaReported employees: 11-50 | Sydney, Australia | 11-50 | Exact match | 42 contacts → |
“Rare Cancers Australia (RCA) is a leading for-impact charity that works to improve the lives and health outcomes of Australian patients, carers and families affected by a rare or…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 18 | Raríssimasrarissimas.pt HQ: Lisbon, PortugalReported employees: 51-200 | Lisbon, Portugal | 51-200 | Exact match | 41 contacts → |
“A Raríssimas – Associação Nacional de Deficiências Mentais e Raras é uma IPSS, fundada em Abril de 2002, que desenvolve a sua acção junto de doentes e familiares que convivem de…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 19 | 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. | |||||
| 20 | Association ELAela-asso.com HQ: Laxou, FranceReported employees: 11-50 | Laxou, France | 11-50 | Exact match | 38 contacts → |
“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…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 21 | Fundación Spinespine.org.ar HQ: Ciudad De Buenos Aires, ArgentinaReported employees: 11-50 | Ciudad De Buenos Aires, Argentina | 11-50 | Exact match | 38 contacts → |
“Fundación SPINE es una asociación sin fines de lucro que realiza investigación y tratamiento de pacientes con enfermedades raras o poco frecuentes, con el objetivo de mejorar su…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 22 | 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. | |||||
| 23 | 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. | |||||
| 24 | 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. | |||||
| 25 | Partners4accesspartners4access.com HQ: London, United KingdomReported employees: 11-50 | London, United Kingdom | 11-50 | Exact match | 28 contacts → |
“At Partners4Access, we believe patients with rare diseases deserve the right to access the most appropriate treatment.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
Showing 25 of 672 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
672 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 across the whole country list rather than for Worldwide, so it is reported there. Company counts and contact totals on this page are exact for Worldwide, over 672 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 ↗
Rare disease nonprofits by location
3 lists · largest firstEvery Rare disease nonprofits list RevenueBase publishes, by country and city. Counts are matching companies in each list as of its own refresh date.
Countries
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 worldwide?
The saved snapshot records 672 matching company records, 5,955 tracked contacts and 1,935 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
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Cite this list
RevenueBase Data Team. Top 25 rare disease nonprofits worldwide. Snapshot: September 21, 2026. https://revenuebase.ai/companies/browse/rare-disease-nonprofits.
This is a selected public preview of saved company records, rather than an independently verified census. Open the source page ↗
More company lists
Company intelligence · public preview
Top 25 rare disease nonprofits worldwide
RevenueBase records 672 matching company records for rare disease nonprofits worldwide, with 5,955 tracked contacts and 1,935 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 worldwide
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 | Afm-Téléthonafm-telethon.fr HQ: Evry, FranceReported employees: 201-500 | Evry, France | 201-500 | Exact match | 571 contacts → |
“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.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 2 | Lifearclifearc.org HQ: London, United KingdomReported employees: 201-500 | London, United Kingdom | 201-500 | Exact match | 409 contacts → |
“LifeArc® is a self-funded medical research organisation with one clear purpose – transforming the lives of people living with rare diseases and drug-resistant infections.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 3 | 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. | |||||
| 4 | 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. | |||||
| 5 | 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. | |||||
| 6 | Orphalanorphalan.com HQ: Paris, FranceReported employees: 51-200 | Paris, France | 51-200 | Exact match | 118 contacts → |
“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…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 7 | Ågrenskaagrenska.se HQ: Hovås, SwedenReported employees: 201-500 | Hovås, Sweden | 201-500 | Exact match | 110 contacts → |
“Ågrenska is a national centre of competence for rare diseases and other disabilities.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 8 | 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. | |||||
| 9 | Eurordis-Rare Diseases Europeeurordis.org HQ: Paris, FranceReported employees: 11-50 | Paris, France | 11-50 | Exact match | 75 contacts → |
“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…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 10 | 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. | |||||
| 11 | 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. | |||||
| 12 | Sobi Iberiasobi.es HQ: Madrid, SpainReported employees: 51-200 | Madrid, Spain | 51-200 | Exact match | 53 contacts → |
“Sobi es una compañía biofarmacéutica internacional que trabaja cada día para ofrecer terapias y servicios innovadores que mejoren la vida de las personas con enfermedades raras y…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 13 | Federación Española DE Enfermedades Rarasenfermedades-raras.org HQ: Madrid, SpainReported employees: 51-200 | Madrid, Spain | 51-200 | Exact match | 49 contacts → |
“La Federación Española de Enfermedades Raras (FEDER) nació en con el objetivo de ser la esperanza de más de tres millones de personas que conviven con estas patologías en nuestro…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 14 | 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. | |||||
| 15 | Ciber Enfermedades Rarasciberer.es HQ: Madrid, SpainReported employees: 51-200 | Madrid, Spain | 51-200 | Exact match | 48 contacts → |
“The CIBERER is a cooperative network structure, with 60 research groups located in the main research centres all over Spain.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 16 | 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. | |||||
| 17 | Rare Cancers Australiararecancers.org.au HQ: Sydney, AustraliaReported employees: 11-50 | Sydney, Australia | 11-50 | Exact match | 42 contacts → |
“Rare Cancers Australia (RCA) is a leading for-impact charity that works to improve the lives and health outcomes of Australian patients, carers and families affected by a rare or…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 18 | Raríssimasrarissimas.pt HQ: Lisbon, PortugalReported employees: 51-200 | Lisbon, Portugal | 51-200 | Exact match | 41 contacts → |
“A Raríssimas – Associação Nacional de Deficiências Mentais e Raras é uma IPSS, fundada em Abril de 2002, que desenvolve a sua acção junto de doentes e familiares que convivem de…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 19 | 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. | |||||
| 20 | Association ELAela-asso.com HQ: Laxou, FranceReported employees: 11-50 | Laxou, France | 11-50 | Exact match | 38 contacts → |
“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…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 21 | Fundación Spinespine.org.ar HQ: Ciudad De Buenos Aires, ArgentinaReported employees: 11-50 | Ciudad De Buenos Aires, Argentina | 11-50 | Exact match | 38 contacts → |
“Fundación SPINE es una asociación sin fines de lucro que realiza investigación y tratamiento de pacientes con enfermedades raras o poco frecuentes, con el objetivo de mejorar su…” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
| 22 | 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. | |||||
| 23 | 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. | |||||
| 24 | 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. | |||||
| 25 | Partners4accesspartners4access.com HQ: London, United KingdomReported employees: 11-50 | London, United Kingdom | 11-50 | Exact match | 28 contacts → |
“At Partners4Access, we believe patients with rare diseases deserve the right to access the most appropriate treatment.” Recorded description excerpt · September 21, 2026Open company data in RevenueBase ↗Free signup required. | |||||
Showing 25 of 672 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
672 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 across the whole country list rather than for Worldwide, so it is reported there. Company counts and contact totals on this page are exact for Worldwide, over 672 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 ↗
Rare disease nonprofits by location
3 lists · largest firstEvery Rare disease nonprofits list RevenueBase publishes, by country and city. Counts are matching companies in each list as of its own refresh date.
Countries
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 worldwide?
The saved snapshot records 672 matching company records, 5,955 tracked contacts and 1,935 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
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Cite this list
RevenueBase Data Team. Top 25 rare disease nonprofits worldwide. Snapshot: September 21, 2026. https://revenuebase.ai/companies/browse/rare-disease-nonprofits.
This is a selected public preview of saved company records, rather than an independently verified census. Open the source page ↗