About

The story behind TREND Community

Like many great ideas, it started with a personal experience. Founders Maria Picone and Christopher DeFelice found themselves immersed in the frightening and disorienting experience of navigating life with a rare disease when their child was diagnosed with the genetic disorder Prader-Willi syndrome (PWS). It was challenging at first—information on the current standard of care was scarce and outdated. They felt isolated and ill-equipped to deal with what lay ahead.

Then they connected with an online community of parents whose children with PWS were thriving, and everything changed.

This community held the knowledge that could offer their child hope for an independent and happy future. Inspired by the power of these organic communities, Maria and Christopher created the TREND Community.

Our proprietary technology listens to the online conversations happening within underserved rare, chronic, and emerging disease communities and derives actionable insights for community stakeholders, medical teams, researchers, scientists, biotechs, pharmaceutical companies, and regulatory agencies. We learn through listening, and we spark progress through insight.

Certified B Corp Icon

TREND Community is a Certified B Corporation, a distinction requiring companies to meet social sustainability, environmental performance, accountability, and transparency standards.

Why a community-first approach?

We believe that a collective understanding of many rare, chronic, and emerging diseases is limited because too many voices are left out of the conversation. This is a problem that hinders progress. While designing our technology, we aimed to:

  • Promote a holistic understanding of living with a rare disease beyond the people and family members affected by it
  • Help identify currently under recognized symptoms, secondary diagnoses, unmet needs, and psychosocial burdens
  • Create a clear channel between people living with rare, chronic, and emerging diseases and the researchers and scientists who design clinical trials
  • Amplify authentic voices of advocacy for our communities
  • Abandon the notion that “the patient voice” is singular. We believe that every individual facing a rare, chronic, or emerging disease is unique and experiences the patient journey differently
There are over 10,000 rare
diseases
that impact nearly 400 million
people globally
And only 5% of known rare diseases have an approved treatment option.

Through online listening and insight-driven learning, we make powerful connections—both personal and scientific—like never before.

SEE WHO WE SERVE