Health journaling app leverages the latest technology in natural language processing (NLP) to provide insightful summaries that could impact care and guide the course of therapy

Know Rare launches HealthStoryAI app for people living with rare disease, leveraging the latest natural language processing (NLP) technology

NEW YORK, Dec. 03, 2024 (GLOBE NEWSWIRE) -- Know Rare, a global support platform for people impacted by rare disease and rare cancers, today announced the launch of its HealthStoryAI health journaling app designed to be customizable to any condition. Download the app at healthstoryai.com.

Currently, 25-30 million Americans live with at least one of 7,000 documented rare diseases, creating a significant group of people that are dealing with unique situations and experiences. Developed by a team of people living with the realities of rare disease, the HealthStoryAI app is an easy to use, secure platform to collect events and experiences of managing the disease in everyday life. The app's analytics provide insightful summaries that can validate experiences of symptoms and accompanying emotions to be shared with doctors and care teams. This app is customizable and can be tailored to meet the specific needs of each condition.

"Living with rare disease can mean working with different clinical care teams, with several months' gap between specialist appointments,” said Nina Wachsman, CEO and co-founder of Know Rare. "Know Rare created the HealthStoryAI app to make capturing notes on what has happened in between visits simple and easy to selectively share with whoever they choose - teachers, caregivers, specialists. Using this tool, people can better understand and manage the care of their rare disease.”

Through the HealthStoryAI app, people can capture the moments of concern, confusion, and helplessness that accompanies symptoms and exacerbations, or the little victories that can be empowering. With relevant details about their health condition and disease status centralized in one place, essential information is easily accessible, which may be life-saving in emergency situations.

In the two months since it launched, about 500 people impacted by rare disease are engaged with the HealthStoryAI app for many conditions, including Myasthenia Gravis (MG) and myositis. The fatigue and emotional health surveys have been taken nearly 150 times, with results showing more than half (53%) are experiencing severe fatigue and significant emotional health distress reported in almost all respondents (96%).

Innovative features include:

• Voice journaling: Makes it easier, especially for those who have vision problems, with AI-transcription to discern words for those who have difficulty speaking clearly.
• Standardized surveys: Sourced from clinical literature to assess levels of anxiety, emotional distress, fatigue, and stress, and validating the extent of the impact on daily life.
• Analytics: Uses NLP to summarize entries and survey results into a concise report, providing insights which could impact care.
• Selective sharing: Users control which data can be shared with caregivers, doctors, spouses, teachers, or on social media.
• Customizable medication reminders and notifications: Schedule reminders for taking different medications and set up "flags” of summaries to be shared with healthcare providers.
• Easy access to digital health records: Includes lab and imaging results, which can be important in emergency situations.

Since the experiences can be different among various rare diseases, the journaling app was designed to be fully customizable-both from a user's perspective or for a specific disease or health condition. Know Rare is working with patient advocacy groups and leading researchers to customize the app for specific disease states to document experiences of day-to-day living from regular app users. Researchers will only have access to deidentified data for their analytics, and their findings may help in the understanding of the disease and in the discovery of new treatments.

Download the HealthStoryAI app at healthstoryai.com on the App Store and Google Play. 

About Know Rare

Know Rare, a growing global rare disease support network of more than 21,000 people, 200 researchers, and over 50 organizations, is changing what it's like to live with rare disease. Fostering real connection, empathy, and insight, Know Rare connects people living with rare diseases with information, specialists, clinical studies, advocacy organizations, and peers with the same condition or with similar experiences. Partnering with rare disease researchers and sponsors, Know Rare's observational cohort of consented participants with their medical records, can provide researchers with valid, unprecedented longitudinal data on living with a rare disease beyond what is captured at yearly or biannual office visits or check-ins. With the collaboration of leading researchers and patient organizations in autoimmune, cancer, neurological, metabolic, rare kidney and cardiac conditions, the data collected is much needed for the development of new treatments.

We know rare. For more information, visit www.research.knowrare.com/sponsors or follow us on LinkedIn, Instagram or YouTube.

Media Contact:

Heather Caouette

RAE Communications

+1 508-579-3894

heatherc@rae-communications.com

A photo accompanying this announcement is available at

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