Former IBM ethics director launches free rare disease resource for CCI patients

Monica Dubeau has launched You Might Be a Zebra, a free patient platform focused on craniocervical instability and related complex conditions after her own 20-month diagnostic journey. The site aims to help patients find clearer guidance, provider leads and lived-experience support as rare disease advocacy and diagnostic standards evolve.

Why it matters: - Patients with craniocervical instability and overlapping rare conditions often face long delays, fragmented information and unclear next steps. - The new platform is built to shorten that search by organizing plain-language guidance, recovery realities and provider discovery tools in one place. - The launch comes as rare disease advocacy, classification updates and care guidance for EDS and HSD are moving toward major changes in late 2026 and early 2027.

What happened: - Monica Dubeau launched You Might Be a Zebra, a free patient resource platform centered on craniocervical instability, or CCI. - The platform also covers Chiari malformation, hypermobile Ehlers-Danlos syndrome, or hEDS, hypermobility spectrum disorder, or HSD, and tethered cord. - Dubeau built the site during recovery from Chiari decompression and occipital-to-C3 spinal fusion surgery. - The platform is live now at the company’s announcement.

The details: - Dubeau’s platform grew out of a 20-month diagnostic odyssey that included 111 appointments, 26 specialists, four states and two countries. - The resource includes two main sections: the Zebra Hub and the Resources section. - The Zebra Hub offers plain-language guides, condition and surgery explainers, a curated provider directory and patient FAQs. - The Resources section collects communities, diagnostic tools, books, videos and podcasts Dubeau used during her search, plus her notes and insights. - The provider directory is meant to help patients understand where to begin, what expertise may matter and where to look next. - The platform is educational and does not provide medical advice, diagnosis or treatment. - Dubeau spent more than 25 years in business leadership roles, including two decades in audit, compliance, privacy, corporate governance and AI oversight. - At IBM, Dubeau led global teams and programs on data privacy, AI ethics and emerging AI regulatory requirements, including trustworthy AI initiatives across more than 170 countries. - Dubeau later co-founded an early-stage AI governance and compliance technology company. - Dubeau also worked as a corporate auditor at JPMorgan Chase and Santander. - Dubeau is writing a memoir, You Might Be a Zebra: Rare Unveiled, which is in editorial process.

Between the lines: - Dubeau’s background in audit, compliance and AI governance shaped the way she approached her own medical search: by connecting disconnected clues and systems. - The platform fills a gap that clinical sources often leave open, especially around recovery timelines, daily-life tradeoffs and patient experience. - The project reflects a broader shift in rare disease advocacy toward patient-built tools that translate complex medical information into practical guidance. - Dubeau’s scheduled testimony before the Massachusetts Rare Disease Advisory Council on July 23 adds a policy angle to the launch. - The EDS and HSD communities are also awaiting a major update to the 2017 international classification and diagnostic framework, announced for Dec. 1, 2026, with a related best-practice care and management publication expected in March 2027. - The Ehlers-Danlos Society says the new framework will replace previously published diagnostic criteria once published.

What’s next: - Dubeau is scheduled to testify before the Massachusetts Rare Disease Advisory Council on July 23 to advocate for policy change for rare and complex conditions. - The next major milestone for the EDS and HSD space is the framework update announced for Dec. 1, 2026, followed by the care and management publication expected in March 2027. - Dubeau said she hopes the platform helps patients find the right door years sooner than she did.

The bottom line: - You Might Be a Zebra turns one patient’s difficult diagnostic path into a free guide for others navigating CCI and related rare conditions.