The Problem
A first-of-its-kind genetics-focused initiative supporting families and individuals affected by GRN-related frontotemporal dementia, a rare, devastating disease with low public awareness, limited resources, and a community that needed a trusted, accessible hub. The organization needed to be built from the ground up: brand, voice, content, and community, all at once.
The Insight
Families navigating a frightening diagnosis need compassion and clarity. Providers need clinical credibility. Research and community partners need both. Building content that serves all three, without confusing, alienating, or overwhelming any of them, was the central design challenge from day one.
What we did
Embedded from inception as fractional marketing lead, owning every layer of brand and content development including the website. Built the foundational brand identity, messaging architecture, and content strategy from zero. Content development remains the ongoing core of the work: creating resources for individuals and families navigating a frightening diagnosis first, providers needing clinically credible materials second, and community and research partners third. Layered active marketing presence across social media, conferences, and paid channels to ensure those resources reach the people who need them.
The Result
A trusted, functioning resource hub built from zero. A content and channel strategy that has grown awareness among patients, families, and clinicians simultaneously, with campaigns that meet each audience where they are.
Compassionate and clear for families navigating overwhelming news. Scientifically credible for the providers and partners who serve them. The work is ongoing. The hub continues to grow as the community around it does.
Recognition
The Progranulin Information Navigator has become a trusted resource within the rare disease community, cited by clinicians and research partners, and used by families navigating one of the most difficult diagnoses a family can receive.