Company lists · Data refreshed September 2026
Top 25 Disease specific nonprofits worldwide
RevenueBase identified 141 disease specific nonprofits worldwide as of September 2026 and tracks 835 professional contacts across them, including 197 with verified work emails. The United States is the largest market and Madrid the largest hub.
This list covers disease specific nonprofits worldwide, matched on what each company actually does as described in its own words. Ranked by team size, largest first. Every row shows the company's own description, its RevenueBase Smart Search rating, and when it was last checked. Data refreshed September 19, 2026. Country and city lists for disease specific nonprofits follow the table.
Published by RevenueBase, a B2B data infrastructure company. This list was built with RevenueBase Smart Search, the natural-language company search RevenueBase customers use to build their own targeted lists and unlock verified emails and direct dials at the companies on them. How these lists are built and judged.
The 25 largest disease specific nonprofits worldwide
Ranked by team size| # | Company | Contacts | |||
|---|---|---|---|---|---|
| 1 | 103 contacts → | ||||
Indirect evidence “Established in 1996, Patient Advocate Foundation has been breaking down healthcare barriers for patients diagnosed with chronic, life threatening and/or debilitating illnesses by…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 2 | 81 contacts → | ||||
Partial evidence “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…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 3 | 41 contacts → | ||||
Indirect evidence “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…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 4 | 28 contacts → | ||||
Indirect evidence “Seja bem-vindo(a) a página da Casa Hunter.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 5 | 21 contacts → | ||||
Partial evidence “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, &…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 6 | 19 contacts → | ||||
Indirect evidence “When you hear hoofbeats, think of horses, not zebras.” These are the words of Theodore Woodward - an American physician - and the reason we exist.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 7 | 13 contacts → | ||||
Partial evidence “Our Objectives Rare Diseases Patients Helpline and Helpdesk: ORDI runs a national rare disease hotline (+91 8892 to hear the needs of rare disease patients.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 8 | 11 contacts → | ||||
Indirect evidence “ALAN – Maladies Rares Luxembourg est une association sans but lucratif (a.s.b.l.) fondée en 1998 et reconnue d’utilité publique depuis La mission d’ALAN consiste à améliorer la…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 9 | 10 contacts → | ||||
Partial evidence “At Know Rare, we aim to connect people living with rare diseases to information about their conditions as well as to specialists, clinical studies, advocacy organizations, and…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 10 | 10 contacts → | ||||
Indirect evidence “Le Regroupement Québécois des Maladies Orphelines (RQMO) a comme mission: 1.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 11 | 8 contacts → | ||||
Partial evidence “LeadPath Healthcare Innovations – Navigating the Path Less Taken in Rare Disease Care LeadPath Healthcare Innovations is a purpose-driven organization on a mission to transform…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 12 | 8 contacts → | ||||
Partial evidence “The Genesis Foundation for Children provides funding for the diagnosis and compassionate, coordinated care of children born with genetic disorders, rare diseases, and disabilities.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 13 | 8 contacts → | ||||
Indirect evidence “Jaasiel S.A.S es una entidad dedicada a la atención integral de las personas que viven y conviven con enfermedades de alto costo y alto impacto social.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 14 | 7 contacts → | ||||
Partial evidence “The Spanish Patient Forum defends the interests of those affected by the disease, through training, prevention, research and associative promotion.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 15 | 6 contacts → | ||||
Indirect evidence “Headquartered in Pittsburgh, the Community Liver Alliance has grown to have a national presence while still holding true to a mission to invest in local communities and give voice…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 16 | 6 contacts → | ||||
Indirect evidence “We are a not for profit organisation (recognised by HMRC as a charity), working to support anyone living with or caring for someone with a rare condition.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 17 | 6 contacts → | ||||
Indirect evidence “Founded in 2017, Jack’s Butterflies is an Australia Charity registered with the ACNC and endorsed by the ATO; thereby offering tax deductible donations to our supporters.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 18 | 5 contacts → | ||||
Indirect evidence “The Avalon Foundation is BY KIDS- FOR KIDS!” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 19 | 5 contacts → | ||||
Indirect evidence “There are so many patients in advocacy groups worldwide who are full of energy, commitment and will to improve other people’s lives.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 20 | 5 contacts → | ||||
Partial evidence “Patient Worthy® provides current and continuous coverage of rare disease patient experiences, news, and events, through an online platform and broad social media presence.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 21 | 5 contacts → | ||||
Indirect evidence “Somos una Asociación de Pacientes sin fines de lucro, independiente de cualquier institución pública o privada que compartimos el mismo camino con el objetivo de FORMAR UNA…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 22 | 5 contacts → | ||||
Indirect evidence “Heal Canada is a registered not-for-profit organization dedicated to patient advocacy, education and collaboration among patient advocacy groups and other healthcare stakeholders.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 23 | 4 contacts → | ||||
Partial evidence “CheckOrphan is a dynamic and interactive platform dedicated to people working with or affected by rare, orphan or neglected diseases.” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 24 | 4 contacts → | ||||
Strong evidence “Nonprofit association for people with rare diseases and their famlies” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
| 25 | 4 contacts → | ||||
Indirect evidence “La Sociedad Hispana de Enfermedades Raras (SHER) nace en diciembre de 2021 con el objetivo de promover y dar visibilidad, apoyo y entrenamiento a las familias hispanas que…” Source: RevenueBase Database · checked Sep 19, 2026Thanks. The Data Team will review it. | |||||
RevenueBase Smart Search
RevenueBase Smart Search assesses information from a company’s LinkedIn profile, information supplied directly by the company, its website, and other publicly available sources. It uses that information to rate how closely the company relates to this list’s category: disease specific nonprofits. Every row carries its rating and the description the rating was read from, so each one can be checked rather than taken on trust.
- Strong evidence
- The company's own public description of its business names disease specific nonprofits.
- Partial evidence
- Its own public description names part of disease specific nonprofits, so it works in or next to the category without describing itself that way.
- Indirect evidence
- The description shown does not name disease specific nonprofits. The match rests on the rest of the company's public profile rather than the one sentence quoted here, so this is the rating to check first.
RevenueBase Smart Search is how these lists are built: RevenueBase's data engine and AI assemble the companies that match a category defined in a user's own words, so a list can be about what companies actually do rather than about whichever industry code they were filed under.
Showing 25 of 141 disease specific nonprofits worldwide
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Disease specific nonprofits worldwide at a glance
As of Sep 19, 2026Companies by employee count
Email recency is reported on each country list linked below.
How this list was built
Company categories are rarely black and white. RevenueBase reads each company's own description of its business to decide whether it belongs among disease specific nonprofits, so some rows will be adjacent to the category rather than pure plays. The description and RevenueBase Smart Search rating on every row are there so you can check each match yourself.
- Source
- The RevenueBase company graph: 60 million companies and 398.9 million professional contacts resolved from primary sources, queried with RevenueBase Smart Search, the natural-language company search available to every RevenueBase user.
- Coverage
- Every country. Country and city lists for disease specific nonprofits are linked below.
- What qualifies
- Companies worldwide whose own description of what they do matches “disease specific nonprofits”. Matching reads each company's description, not its industry code or its name.
- RevenueBase Smart Search
- RevenueBase Smart Search is how this list is assembled and how each row is rated. RevenueBase's data engine and AI assess a company's LinkedIn profile, information supplied directly by the company, its website and other publicly available information, then relate it to a category defined in a user's own words. Each row is rated strong evidence (its own description names disease specific nonprofits), partial evidence (it names part of the category) or indirect evidence (the description shown names none of it and the match rests on the rest of the company's profile). The description supporting each rating is quoted on the row.
- What we exclude
- Companies whose own description does not clearly place them among disease specific nonprofits, and records with no verified work email.
- Match quality
- In blind human judging of this matching method, 86% of matched companies were on target. Expect roughly 1 in 7 rows to be adjacent to the category rather than a pure play. Every row shows the company's own description and its RevenueBase Smart Search rating so you can judge each match yourself. Read the full methodology: how the lists are built, how the judging worked, and what the figure means.
- Ranking
- Team size, largest first: companies are ordered by the number of professionals RevenueBase tracks at each one. Employee ranges shown are reported bands, for context.
- Verification
- Every listed company carries at least one verified work email, 197 across the full list. Contacts re-verify on a rolling cadence, and each contact's own verification date is shown inside RevenueBase.
- Refresh
- This page's figures were pulled from the company graph on September 19, 2026. Lists refresh periodically as the graph is re-checked.
- Corrections
- Wrong category, wrong headquarters, or a company that has closed? Use “Report an issue” on any row. Reports go to the RevenueBase Data Team and feed back into the company graph.
Disease specific nonprofits by location
1 lists · largest firstEvery Disease specific 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 Smart Search?
RevenueBase Smart Search is how RevenueBase decides which companies belong on this list and how strongly each one fits. Its data engine and AI assess a company's LinkedIn profile, information supplied directly by the company, its website and other publicly available information, then relate it to the category the list is about. Each row is rated strong evidence when the company's own description names disease specific nonprofits, partial evidence when it names part of the category, and indirect evidence when the description shown names none of it and the match rests on the rest of the company's profile.
How many disease specific nonprofits are there worldwide?
RevenueBase identified 141 disease specific nonprofits worldwide as of September 2026, matched on each company's own description of what it does rather than its industry code.
What is the largest company on this list?
Patient Advocate Foundation, headquartered in Hampton, tops this list with the largest team on record.
Which country has the most disease specific nonprofits?
The United States leads with 52 companies. Every disease specific nonprofits list by country and city is linked on this page.
Which city has the most disease specific nonprofits?
Madrid leads with 3 headquartered companies, followed by Toronto (3) and Washington (3).
How do I get contact information for these companies?
A free RevenueBase account lets you run this exact search and work the top results, verified emails and direct dials included. Upgrading unlocks all 197 verified decision-maker contacts tracked across these 141 companies.
How current is this list?
The list refreshes periodically as the company graph is re-checked. This page's figures were pulled on September 19, 2026.
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About this data
RevenueBase is a B2B data infrastructure company. Its company graph covers 60 million companies and 398.9 million professional contacts, with emails verified on a rolling cadence rather than scraped once and left to decay. These company lists are generated directly from that graph with RevenueBase Smart Search, the same natural-language company search every RevenueBase user has: describe a market in plain words, get the companies that match, and add verified emails and direct dials for the people at them. It is the same data that powers RevenueBase's B2B data products, and a free account includes 500 credits to start. How these lists are built and judged.