A US company launches a health journaling app for people living with rare diseases

Living with a rare disease often means navigating uncharted medical and emotional territory. With over 25-30 million Americans impacted by one of the 7,000 documented rare diseases, managing these unique conditions presents significant challenges.

To address these, Know Rare, a global support platform for rare diseases and cancers, has launched HealthStoryAI — a health journaling app that leverages cutting-edge natural language processing (NLP) technology. The app provides personalized insights, helping users track symptoms, emotions, and treatments while empowering them to take control of their care.

How does it work?

The HealthStoryAI app is a secure platform that simplifies the process of recording health-related experiences and symptoms. It uses features such as:

• Voice journaling for ease of use, especially for users with vision problems or speech difficulties, with AI-powered transcription.
• Standardized surveys sourced from clinical literature to assess anxiety, fatigue, and emotional distress.
• NLP-driven analytics that summarize entries and survey results into concise reports for users and healthcare teams.
• Selective sharing tools that let users choose who can access their data — whether it's doctors, caregivers, or even social media.
• Medication reminders and digital health record storage for convenient and timely access in emergencies.

These features are meant to ensure a centralized, personalized approach to managing rare diseases, offering insights that can guide care and potentially save lives.

Why does it matter?

As Nina Wachsman, CEO and co-founder of Know Rare, puts it, "Living with rare disease can mean working with different clinical care teams, with several months' gap between specialist appointments."

This gap often leaves patients feeling unsupported. HealthStoryAI bridges that gap, capturing detailed, real-time health data that patients can share with their care teams.

In addition, the app's analytics validate users' experiences — whether it's tracking severe fatigue (reported by 53% of users) or emotional distress (96%) — and highlight the urgent need for more tailored medical attention. The app provides a sense of control and fosters better understanding among healthcare professionals, caregivers, and researchers.

The context

Rare diseases are, by their nature, highly individualized. Know Rare's mission is to transform the experience of living with these conditions by fostering connections and offering tools that make the journey less isolating. The HealthStoryAI app reflects this ethos by incorporating insights from patient advocacy groups and researchers to ensure it meets the unique needs of its users.

Since its launch, HealthStoryAI has already engaged over 500 individuals, offering customization for conditions like Myasthenia Gravis (MG) and myositis. As Know Rare works with leading researchers to deidentify and analyze user data, the app could play a pivotal role in uncovering new treatment pathways.

Know Rare's broader vision includes collaborating with patient organizations and researchers across a variety of conditions to collect longitudinal data — data critical to understanding rare diseases beyond the snapshots provided in annual or biannual checkups.

"This is about more than just tracking symptoms," emphasizes Wachsman. "It's about enabling people to take charge of their health stories."

Could you bring something like this to the GCC and MENA?