What Patient Worthy does

Patient Worthy is a privately held online publication founded in 2015 and based in Henderson, United States, that covers rare disease news, patient stories, and community resources. The platform serves rare disease patients, caregivers, and advocates by publishing educational content, medical and regulatory news, research updates, and first-person narratives sourced from patients and care partners. Core products include the main website publication, a podcast titled 'Wait, How Do You Spell That? A Rare Disease Podcast' distributed via PodBean, YouTube, and Spotify, an email newsletter, an A-Z rare diseases and conditions library, a curated book library, a patient stories collection, and a patient panel at panel.patientworthy.com for paid market research participation. The underlying technology is a standard web publishing platform with social media integration, email newsletter functionality, and podcast hosting, with no proprietary technical components disclosed.

Name

Patient Worthy

Legal name

Patient Worthy

Website

https://patientworthy.com

Company type

Private

Founded year

2015

Operating status

Operating

Headcount range

1–10 employees

Short description

Patient Worthy is a privately held online publication that produces rare disease news, patient stories, and educational content for patients, caregivers, and advocates, monetized through sponsored content and a paid patient research panel.

Ownership category

akta.pro rank

Headquarters

HQ city

Henderson

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Digital Commerce or Content

Cost components

Personnel, Marketing or Sales, Technology or R&D, Operations

Revenue model

1. Sponsored/Collaborative Content: Patient Worthy publishes sponsored rare disease content on behalf of other organizations. Sponsored content includes promoting events on their events calendar, publishing or curating content on behalf of organizations. All sponsored content is highlighted in posts with the sponsoring organization's name and marked with #Collab on social media.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels9 records

Core offering

Patient Worthy is an online publication platform that produces and distributes rare disease news, patient stories, and educational content through its website, podcast, email newsletter, and social media channels. It also operates a paid patient panel for market research and accepts collaborative/sponsored content from rare disease advocacy organizations.

Product overview

Patient Worthy is a single, unified online publication platform serving the rare disease community. The core offering consists of the Patient Worthy website featuring original news articles, patient stories, and educational resources. Supporting services include a podcast channel, a patient panel for paid research opportunities, an email newsletter, and a library of curated books. All components work together to fulfill the mission of amplifying rare disease voices and connecting patients with information, community, and resources.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Worthy Online Publication An online publication providing rare disease news, patient stories, educational resources, and community connections for rare disease patients, caregivers, and advocates.
• Patient Worthy Podcast Audio content featuring interviews and discussions on rare disease topics, distributed via PodBean, YouTube, and other podcast directories under the title 'Wait, How Do You Spell That? A Rare Disease Podcast.'
• Patient Worthy Patient Panel A paid panel program allowing patients and caregivers to share experiences through surveys, market research, and advisory opportunities.
• Patient Stories A collection of first-person narratives from rare disease patients and caregivers sharing their experiences and journeys.
• Rare Diseases and Conditions Library An A-Z directory of rare diseases and conditions providing educational information and resources for patients and caregivers across hundreds of conditions.
• Library (Books) A curated collection of books related to rare diseases and chronic illness, featuring works by Patient Worthy contributors.

Segments4 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

58 partnerships are on record, tiered minor and core.

• A Breath of Hope Foundation for NMOminorGTM or Marketing PartnerPartner organization focused on Neuromyelitis Optica (NMO) awareness and support.
• A Fresh ChapterminorGTM or Marketing PartnerPartner focused on cancer support and community building.
• Alagille Syndrome AllianceminorGTM or Marketing PartnerAdvocacy organization for Alagille Syndrome patients.
• Alex, The Leukodystrophy CharityminorGTM or Marketing PartnerUK-based charity supporting patients with leukodystrophies.
• Alport Syndrome FoundationminorGTM or Marketing PartnerFoundation dedicated to Alport Syndrome research, awareness, and patient support.
• Alström Syndrome UKminorGTM or Marketing PartnerUK organization supporting patients with Alström Syndrome.
• American Liver FoundationminorGTM or Marketing PartnerNational organization dedicated to liver disease research, education, and support.
• Amyloidosis FoundationminorGTM or Marketing PartnerFoundation focused on amyloidosis awareness and patient support.
• Angelman Syndrome FoundationminorGTM or Marketing PartnerFoundation dedicated to Angelman Syndrome research and family support.
• ANGEL AID CARESminorGTM or Marketing PartnerOrganization supporting mothers of children with rare diseases.
• Aplastic Anemia and MDS International FoundationminorGTM or Marketing PartnerInternational foundation supporting patients with aplastic anemia and myelodysplastic syndromes.
• Avery's AngelsminorGTM or Marketing PartnerOrganization supporting gastroschisis awareness and research.
• BARE (Biliary Atresia Research and Education)minorGTM or Marketing PartnerOrganization focused on biliary atresia research and education.
• Batten Disease Support and Research AssociationminorGTM or Marketing PartnerBDSRA supports families affected by Batten disease through research and support services.
• BHD FoundationminorGTM or Marketing PartnerFoundation supporting Birt-Hogg-Dubé syndrome patients and research.
• Born a HerominorGTM or Marketing PartnerNonprofit focused on Pfeiffer Syndrome awareness and social issues.
• Bridge the Gap - SYNGAP Education and Research FoundationminorGTM or Marketing PartnerFoundation dedicated to SYNGAP syndrome research and education.
• Burning Nights CRPSminorGTM or Marketing PartnerOrganization supporting Complex Regional Pain Syndrome (CRPS) patients.
• Cambridge Rare Disease NetworkminorGTM or Marketing PartnerUK-based rare disease network fostering collaboration and awareness.
• Cancer CommonsminorGTM or Marketing PartnerOrganization connecting cancer patients with precision medicine information.
• COMBINEDBrainminorGTM or Marketing PartnerConsortium focused on accelerating neurodevelopmental disorder research.
• Courageous Parents NetworkminorGTM or Marketing PartnerOrganization providing support for families of children with serious illness.
• Cure CMDminorGTM or Marketing PartnerFoundation dedicated to congenital muscular dystrophy research.
• CureDuchenneminorGTM or Marketing PartnerOrganization focused on Duchenne muscular dystrophy research and patient support.
• The Ehlers-Danlos SocietyminorGTM or Marketing PartnerGlobal organization dedicated to Ehlers-Danlos syndromes awareness and research.
• The FH FoundationminorGTM or Marketing PartnerFoundation focused on familial hypercholesterolemia awareness and diagnosis.
• FSHD SocietyminorGTM or Marketing PartnerOrganization dedicated to facioscapulohumeral muscular dystrophy research.
• GACI GlobalminorGTM or Marketing PartnerOrganization supporting Generalized Arterial Calcification of Infancy patients and families.
• The Glanzmann's Research FoundationminorGTM or Marketing PartnerFoundation dedicated to Glanzmann's thrombasthenia research.
• Global DARE FoundationminorGTM or Marketing PartnerOrganization focused on Adult Refsum disease awareness.
• Glut1 Deficiency FoundationminorGTM or Marketing PartnerFoundation supporting GLUT1 deficiency patients and research.
• GRIN2B FoundationminorGTM or Marketing PartnerFoundation focused on GRIN2B variation research and support.
• HCU Network AmericaminorGTM or Marketing PartnerNetwork supporting homocystinuria patients and families in America.
• International Pemphigus & Pemphigoid FoundationminorGTM or Marketing PartnerFoundation dedicated to pemphigus and pemphigoid patient support.
• The International Waldenstrom's Macroglobulinemia Foundation (IWMF)minorGTM or Marketing PartnerOrganization supporting Waldenstrom macroglobulinemia patients.
• Jordan's Guardian AngelsminorGTM or Marketing PartnerFoundation focused on Jordan's Syndrome research.
• Koolen-de Vries Syndrome FoundationminorGTM or Marketing PartnerFoundation supporting Koolen-de Vries Syndrome patients.
• KrabbeConnectminorGTM or Marketing PartnerOrganization connecting Krabbe disease patients with resources.
• The Life Raft GroupminorGTM or Marketing PartnerOrganization supporting GIST (gastrointestinal stromal tumor) patients.
• Miracle FlightsminorGTM or Marketing PartnerOrganization providing flights for children with rare diseases to access medical care.
• National Organization for Rare Disorders (NORD)coreGTM or Marketing PartnerLeading rare disease organization in the US - Patient Worthy's partnership with NORD represents a significant industry relationship for rare disease advocacy visibility.
• NCBRS Worldwide FoundationminorGTM or Marketing PartnerFoundation supporting Nicolaides-Baraitser Syndrome patients.
• Niemann Pick FranceminorGTM or Marketing PartnerFrench organization supporting Niemann-Pick disease patients.
• Our OdysseyminorGTM or Marketing PartnerOrganization supporting rare young adults through outdoor experiences.
• Patient Airlift ServicesminorGTM or Marketing PartnerOrganization providing free flights for patients needing medical transportation.
• PKD FoundationminorGTM or Marketing PartnerFoundation dedicated to polycystic kidney disease research and awareness.
• PRISMSminorGTM or Marketing PartnerOrganization focused on Smith-Magenis Syndrome awareness.
• Rare Genomics InstituteminorGTM or Marketing PartnerOrganization making precision medicine accessible for rare disease patients.
• Rare & Undiagnosed Network (RUN)minorGTM or Marketing PartnerNetwork supporting undiagnosed and rare disease patients.
• The Sumaira Foundation for NMOminorGTM or Marketing PartnerFoundation dedicated to neuromyelitis optica (NMO) awareness.
• SynGAP Research FundminorGTM or Marketing PartnerOrganization funding SynGAP1 research.
• TAPS Support FoundationminorGTM or Marketing PartnerFoundation dedicated to Twin Anemia Polycythemia Sequence awareness.
• The Oley FoundationminorGTM or Marketing PartnerOrganization supporting home parenteral and enteral nutrition patients.
• United Leukodystrophy FoundationminorGTM or Marketing PartnerFoundation dedicated to leukodystrophy patient support and research.
• The VHL AllianceminorGTM or Marketing PartnerOrganization supporting von Hippel-Lindau patients and research.
• Uplifting AthletesminorGTM or Marketing PartnerOrganization connecting rare disease community with collegiate athletes.
• The Vestibular Disorders Association (VeDA)minorGTM or Marketing PartnerAssociation providing support for vestibular disorders patients.
• The Sturge-Weber FoundationminorGTM or Marketing PartnerFoundation dedicated to Sturge-Weber Syndrome awareness.

Scale indicators2 records

Expansion highlights6 records

Direct peers

• Health Union: Health Union builds and operates condition-specific patient communities (e.g., Migraine.com, MultipleSclerosis.net) with editorial and patient-story content. Comparable to Patient Worthy in publishing patient-driven content and monetizing through life-sciences sponsorships.
• PatientsLikeMe: PatientsLikeMe is a patient community platform that collects structured patient-reported outcomes and shares them with researchers and pharma. Comparable to Patient Worthy in serving rare/chronic condition patients and monetizing via health-data and research partnerships.
• Inspire: Inspire operates one of the largest online patient-community platforms with condition-specific groups, including rare diseases. It overlaps with Patient Worthy in audience (patients/caregivers) and in monetizing patient engagement through market-research and sponsorship partnerships.
• Global Genes: Global Genes is a rare-disease advocacy organization that produces educational content, toolkits, and partner programs. Comparable to Patient Worthy in covering hundreds of rare diseases and partnering with patient advocacy groups for amplification.
• Rare Patient Voice: Rare Patient Voice recruits rare-disease patients and caregivers for paid market-research studies. Comparable in mission (amplifying rare-disease patient voices) and in operating a paid market-research panel as a monetization layer.
• Savvy Cooperative: Savvy Cooperative is a patient-owned cooperative that connects patients with healthcare companies for insights and co-creation. Comparable to Patient Worthy's patient panel motion and broader patient-storytelling positioning.
• Wego Health: Wego Health runs a network of patient leaders/advocates used by pharma and healthcare brands for content, speaking, and market research. Comparable to Patient Worthy in monetizing patient voices through sponsored content and advocacy programs.
• CureToday (CURE Media Group): CureToday publishes patient-facing cancer content and partners with advocacy organizations. Comparable to Patient Worthy in running a sponsored-content media business oriented around patient storytelling in a specific disease vertical.

Broad incumbents

• Healthline: Healthline is a large-scale general-health publisher covering many rare conditions with editorial content and sponsored partnerships. Comparable to Patient Worthy in monetizing patient-health content via sponsorships but at vastly greater scale.

Emerging players

• Mighty (mightylittlemin.com / MightyWell): Mighty operates a patient community platform for people with chronic and rare conditions. Comparable to Patient Worthy in building an audience of chronic/rare-disease patients and caregivers for content and brand partnerships.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xtwitter.com/patientworthy
• YouTubeyoutube.com/channel/UC3PsoCLzLXOfue4BGcol7Fg
• Facebookfacebook.com/patientworthy
• LinkedInlinkedin.com/company/patient-worthy
• Instagraminstagram.com/patientworthy
• TikToktiktok.com/@patientworthyrarenews
• Pinterestpinterest.com/patientworthy

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Patient Worthy