Organization Overview
Being Patient is an independent, journalism-driven news and community platform dedicated to Alzheimer’s disease, dementia, Parkinson’s disease, and brain health. Founded by award-winning journalist Deborah Kan, whose personal experience as a caregiver shaped the platform’s patient-centered mission, Being Patient delivers science-backed reporting, live expert Q&As, learning guides, and real patient and caregiver stories. It is the world’s leading journalism-driven platform for patients, caregivers, scientists, and medical professionals in the dementia and brain health space.
Clinical Trial Education & Awareness Resource
Being Patient advances public understanding of Alzheimer’s clinical research through independent, science-based journalism, education, and community. The platform covers clinical trial developments extensively, reporting on trial results, pipeline updates, and the “why” behind research participation. Regular features such as quarterly trials pipeline updates, expert Brain Talk interviews, and live Q&A sessions with researchers help demystify clinical research for lay audiences, giving patients and caregivers the unbiased information they need to make their own informed decisions. By translating complex science into accessible journalism, Being Patient fosters a more informed and engaged community of patients, caregivers, and clinicians.
The site also includes a learning guide about clinical trials to help potential participants understand what to expect and assess whether a clinical trial might be right for them.
Metrics
Platform Type: Independent digital journalism platform; public benefit company
Audience: Patients, caregivers, APOE4 gene carriers, and healthcare professionals
Content Formats: News articles, Brain Talk video/podcast interviews, live Q&As, learning guides
Community Reach: 44,000+ social media followers; global readership
Trial Coverage: Regular quarterly Alzheimer’s Drug Trial Pipeline Updates
Discussion
One of the most persistent barriers to clinical trial participation is low public awareness — patients and caregivers simply do not know that trials exist, what participation involves, or where to find reliable information. Being Patient helps close this knowledge gap at scale through independent, science-based journalism. Its coverage reaches an engaged, disease-aware community of patients, caregivers, and clinicians, equipping them with the context needed to understand the research landscape. The platform maintains strict editorial independence — its journalism is not influenced by advertisers or sponsors — which lends credibility that builds genuine trust with readers. As a trusted, unbiased source of information, Being Patient serves as a valuable educational resource within the broader brain health and dementia research ecosystem.
Contact
www.beingpatient.com | [email protected] | @BeingPatientAlzheimers
*Content last updated September 2026