TREND Community

What TREND Community does

TREND Community is a Philadelphia-based Public Benefit Corporation (TREND Community PBC) founded in 2014 that operates a digital health analytics platform converting conversations from rare, chronic, and emerging disease communities into structured real-world evidence for healthcare decision-makers. The company's core technology combines proprietary natural language processing, machine learning, and deep sentiment analysis applied to publicly available patient and caregiver conversations on social media and forums, with output packaged as Community Voice Reports (CVRs) and Evidence Accelerators. Its products include the TREND Connect platform, Discord-hosted Connect Communities, Community Voice Reports, Evidence Accelerators, and the underlying Social Listening Analytics engine, all governed by an ethical framework prioritizing community privacy.

The company serves a horizontal stakeholder set including pharmaceutical and biotechnology sponsors, healthcare providers, academic researchers, regulatory agencies (notably the FDA), and patient advocacy organizations, with named enterprise engagements including Takeda Pharmaceutical Company Limited, Kiniksa Pharmaceuticals, and collaborations with over a dozen advocacy groups (PWSA USA, FARA, NTSAD, Hope for HIE, Wake Up Narcolepsy, Global Pericarditis Support Group, Charlie Foundation) and academic medical centers (Texas Children's/Baylor, Vanderbilt, University of Florida, Detroit Medical Center). Revenue is generated through subscription/recurring B2B contracts with pharma sponsors and researchers and professional services arrangements for health initiatives; pricing is not publicly disclosed and community participation is free.

TREND operates as a Certified B Corporation, is HIPAA-conscious in tooling, and has built a longitudinal dataset spanning 7+ years and 15+ rare disease communities, anchored by the founders' personal experience with a child's rare genetic disorder. The company's most significant validated outcome is contributing real-world evidence that supported Kiniksa's FDA Breakthrough Therapy designation for rilonacept in recurrent pericarditis (2019). The team is small, founder-led under Co-Founder/CEO Maria Picone and Co-Founder/CTO Christopher DeFelice, with Chief Scientist Dr. Wei Li providing computational linguistics leadership.

Name

TREND Community

Legal name

TREND Community PBC

Website

https://trend.community

Company type

Private

Founded year

2014

Operating status

Operating

Headcount range

1–10 employees

Short description

TREND Community is a Philadelphia-based digital health analytics company that uses proprietary NLP and social listening to convert conversations from rare, chronic, and emerging disease communities into actionable real-world evidence for pharmaceutical sponsors, healthcare providers, researchers, regulatory agencies, and patient advocacy organizations.

Ownership category

akta.pro rank

Product category

Real-World Evidence Analytics

NAICS

Marketing Research and Public Opinion Polling (541910)

SIC

Services-Prepackaged Software (7372)

akta.pro primary industry

Health, Wellness & Patient Communities (MPACAJAL)

akta.pro secondary industries

Social & Digital Insights (Social Listening, Online Community Research) (MPAAALAK), Patient Education, Content & Personalized Journey Orchestration (HLACAEAE)

Keywords

• Real-world evidence
• Social listening analytics
• Patient community insights
• Rare disease analytics
• Natural language processing

Headquarters

HQ city

Philadelphia

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2B

Offering type

Software

Cost components

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

Revenue model

1. Pharmaceutical and Biotechnology Sponsors: Pharma and biotech companies engage TREND Community to analyze patient conversations and generate real-world evidence for drug development, clinical trial design, regulatory submissions, and post-market surveillance. Revenue is derived from research partnerships, Community Voice Reports, and data analysis services.
2. Healthcare Providers and Researchers: Researchers, healthcare providers, and academic institutions access TREND's analytics to deepen disease understanding, identify clinical endpoints, and support grant-funded research initiatives.
3. Regulatory Agency Support: TREND's real-world evidence is shared with regulatory agencies to support drug approvals, expedited pathways (e.g., FDA Breakthrough Therapy designation), and patient-focused drug development meetings.
4. Health Initiative Partnerships: Sponsored research initiatives funded by patient advocacy organizations, foundations, and pharmaceutical companies focused on specific disease areas (e.g., PWS Diet Initiative, Oxytocin Initiative, Sleep in Rare Accelerator).

Go-to-market motion3 records

Distribution channels4 records

Marketing channels12 records

Core offering

TREND Community operates a digital health analytics platform that uses social listening and natural language processing to analyze publicly available conversations in rare, chronic, and emerging disease communities. The company generates Community Voice Reports (CVRs) and Evidence Accelerator programs that transform patient and caregiver conversations into structured, actionable real-world evidence for pharmaceutical sponsors, biotech companies, healthcare providers, researchers, and regulatory agencies.

Product overview

TREND Community is a digital health analytics company operating as a Public Benefit Corporation (PBC) that offers a platform combining social listening analytics and community engagement tools. The core product is TREND Connect, which works in conjunction with Connect Communities (hosted on Discord) to enable patients, caregivers, and researchers to share and analyze health information. The company generates Community Voice Reports (CVR) through Evidence Accelerators that transform conversational data from rare, chronic, and emerging disease communities into actionable insights for healthcare providers, researchers, pharmaceutical sponsors, and regulatory agencies. The portfolio includes proprietary Social Listening Analytics that process publicly available social media conversations to understand disease experiences, quality of life impacts, and unmet needs across multiple disease communities.

Differentiator

Problem solved

Functional benefit

Brands

• Community Voice Report (CVR): Reports generated from social listening analysis of disease communities
• TREND Connect
• Connect Communities
• Evidence Accelerators

Products and services

• TREND Connect A digital health analytics platform that enables tracking and sharing of health-related information, facilitating participation in TREND communities and communication about platform use. The platform is invitation-only and serves as the company's core data infrastructure.
• Connect Communities Online communities hosted on Discord where patients, caregivers, and individuals can share experiences, participate in discussions, and contribute to research efforts for rare, chronic, and emerging diseases. Members join by agreeing to participation terms.
• Community Voice Reports (CVR) Structured analytical reports generated from social listening data that capture disease burden, management strategies, unmet needs, and quality of life impacts. Reports are shareable with healthcare providers, researchers, and regulatory agencies.

Quantifiable outcome

• TREND's real-world evidence contributed to FDA granting Kiniksa Breakthrough Therapy designation for rilonacept for recurrent pericarditis
• +3 more outcomes

Named customers15 records

Segments5 records

Ideal customer profiles4 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration1 record

AI capability3 records

Feature7 records

Partnerships

16 partnerships are on record, tiered core and minor.

• Takeda Pharmaceutical Company LimitedcoreStrategic or Co-development Partner · 22 September 2021TREND Community announced a collaboration with Takeda Pharmaceutical Company Limited (a MassChallenge HealthTech Champion) to advance their shared commitment to rare disease communities. The partnership involves social listening and real-world evidence generation to support Takeda's rare disease programs.
• Wake Up NarcolepsyminorStrategic or Co-development Partner · 5 August 2021Partnership with Wake Up Narcolepsy to create the Narcolepsy Community Voice Report, facilitated by community leader Matt Horsnell who serves as a facilitator for Wake Up Narcolepsy online small groups.
• PWN4PWN (Feri Ascencion)minorStrategic or Co-development Partner · 5 August 2021Partnership with PWN4PWN (founded by Feri Ascencion) to create the Narcolepsy Community Voice Report, in collaboration with Wake Up Narcolepsy.
• RARE Revolution MagazinecoreStrategic or Co-development Partner · 24 June 2020Joint partnership with RARE Revolution Magazine and RARE Youth Revolution to better understand perspectives and needs of children and young adults living with rare disease. TREND applies its social data analytics to turn stories and conversations into data that drives change for young people affected by rare disease. Includes launch of international intern placement initiative.
• RARE Youth RevolutioncoreStrategic or Co-development Partner · 24 June 2020Joint partnership with RARE Revolution Magazine and RARE Youth Revolution to amplify young voices in the rare disease community and build a cross-condition youth community powered by TREND's social listening technology.
• Kiniksa Pharmaceuticals CorpcoreStrategic or Co-development Partner · 12 December 2019TREND contributed real-world evidence from the recurrent pericarditis community to support Kiniksa's FDA Breakthrough Therapy designation application for rilonacept. TREND established strong community relationships, conducted interviews, and analyzed conversation data to create a Community Impact Report demonstrating disease burden and quality of life impacts, contributing to the expedited regulatory pathway.
• The Chion FoundationcoreStrategic or Co-development Partner · 24 October 2019Multiple health initiatives in partnership with The Chion Foundation focused on narcolepsy as a characteristic of PWS, pitolisant patient experience, and improving quality of life for families touched by PWS and other rare diseases.
• Global Pericarditis Support GroupminorStrategic or Co-development Partner · 10 October 2019Collaboration with Global Pericarditis Support Group to produce the Recurrent Pericarditis Community Voice Report, understanding disease burden and raising awareness for improved treatments.
• Hope for HIEminorStrategic or Co-development Partner · 30 April 2019Partnership with Hope for HIE Support Parent Forum to analyze 7 years of real-world conversation data and produce a Community Voice Report for Hypoxic Ischemic Encephalopathy, identifying key disease burdens including seizures, breathing/eating issues, and gastrointestinal issues.
• JOY (Family Tech Wearables)minorStrategic or Co-development Partner · 23 July 2018PWS Octopus Initiative partnering with JOY to test the Octopus Watch for children with Prader-Willi Syndrome, recruiting 30 families with children ages 5-8 to explore how smartwatch technology helps overcome daily challenges.
• NTSAD (National Tay-Sachs and Allied Diseases Association)minorStrategic or Co-development Partner · 29 May 2018GM1 & GM2 Tanganil Health Initiative created in collaboration with NTSAD and Cure Tay-Sachs Foundation to document patient experiences with off-label use of Tanganil for GM1 and GM2 disorders.
• Cure Tay-Sachs Foundation (CTSF)minorStrategic or Co-development Partner · 29 May 2018GM1 & GM2 Tanganil Health Initiative created in collaboration with NTSAD and Cure Tay-Sachs Foundation to document patient experiences with off-label use of Tanganil for GM1 and GM2 disorders, tracking demographics, dosing, and patient-reported outcomes.
• FARA (Friedreich's Ataxia Research Alliance)minorStrategic or Co-development Partner · 19 June 2017FARA partnered with TREND to generate evidence for their Patient-Focused Drug Development Meeting with the FDA. TREND analyzed Friedreich's Ataxia Facebook group discussions using its analytics engine to summarize data, discover relevant topics, and perform sentiment analysis.
• The Charlie Foundation for Ketogenic TherapiesminorStrategic or Co-development Partner · 19 July 2016Collaboration with the Charlie Foundation for Ketogenic Therapies on the PWS Diet Initiative exploring ketogenic and related diets as interventions for Prader-Willi Syndrome, with consultant nutritionist Beth Zupec-Kania leading dietary guidance.
• PWSA (USA)coreStrategic or Co-development Partner · 1 July 2015Multiple initiatives including Prader-Willi Syndrome Community Voice Report, PWS Diet Initiative exploring ketogenic diet intervention, Oxytocin Initiative for Phase II clinical trial, Sleep research initiatives, and the PWS Octopus Initiative exploring smartwatch technology.
• University of Florida (Drs. Jennifer Miller and Dan Driscoll)minorStrategic or Co-development Partner · 18 June 2015TREND and PWSA (USA) support Drs. Miller and Driscoll (45+ years combined experience treating PWS patients) in their Phase II dose-finding trial of intranasal oxytocin for Prader-Willi Syndrome, working toward FDA approval as standard of care.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Within3: Within3 provides insights from healthcare professional and patient communities for pharmaceutical and life sciences clients. Comparable business model of monetizing health-focused online community conversations for pharma decision-making.
• Inspire: Inspire operates one of the largest online patient community networks, with partnerships to pharma for real-world insights and engagement. Directly comparable to TREND Community's model of monetizing health patient communities through pharma-sponsored research and social listening.
• Health Union: Health Union operates condition-specific online patient communities across chronic and rare disease categories and conducts real-world research, syndicated surveys, and community insights for pharma sponsors. Directly comparable as a community-driven health insights platform.

Broad incumbents

• Komodo Health: Komodo Health aggregates de-identified patient-level healthcare data and provides real-world evidence analytics for pharma, payers, and providers. A much larger incumbent that competes for the same pharma RWE budget, though with claims/EHR data rather than social conversations.
• Tempus AI: Tempus AI is a large precision medicine company combining molecular, clinical, and AI-driven data to support pharma drug development and real-world evidence. Adjacent competitor for pharma RWE budgets, particularly in oncology and rare disease.
• IQVIA: IQVIA is the largest CRO and real-world data company in the world, with extensive patient-centric research services and social listening capabilities for pharma. A broad incumbent competing for the same enterprise pharma budget across RWE services.
• Aetion: Aetion provides a real-world evidence analytics platform used by top pharma and regulators (including FDA collaborations) for healthcare decision-making. Comparable competitor in pharma RWE with established regulator relationships.
• Verana Health: Verana Health aggregates real-world clinical data from specialty physician EHR networks and powers real-world evidence studies for pharma, including in ophthalmology, neurology, and rare disease. Direct overlap in pharma RWE for rare diseases, though Verana's data substrate is clinical rather than social.

Emerging players

• Sermo: Sermo operates a global physician community platform offering real-world insights and observational research for pharma clients. Comparable in the online health community to pharma insights model, though physician-focused rather than patient-focused.

Others

• NetBase Quid: NetBase Quid is a leading enterprise social listening and consumer intelligence platform — TREND's Chief Scientist Dr. Wei Li was previously Chief Architect at Netbase. Comparable technology stack for social listening analytics, though NetBase addresses consumer/brand use cases rather than healthcare.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/trendcommunity

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds2 records

Investors1 record

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 TREND Community