Development, Implementation, and Preliminary Results of a Novel Social Network for Rare Disease Communities: Mixed...

Rare diseases affect approximately 20 million Europeans, presenting unique challenges such as delayed diagnoses, limited therapies, and significant personal and financial burden. While resilience-supporting factors such as peer support are available and artificial intelligence-based diagnostic tools are being developed further, there is a lack of a dedicated online social network connecting patients, caregivers, relatives, and experts. This study presents the development and preliminary findings of Unrare.me, a novel social network designed to provide a secure space for experts and individuals affected by rare and chronic diseases (diagnosed and undiagnosed).

This study aimed to design, develop, and evaluate a social networking platform tailored to the needs of different stakeholders of the rare disease community, facilitating interaction, knowledge exchange, and emotional support while prioritizing data security.

This multidisciplinary, multicenter initiative brought together patient groups, health care professionals, psychologists, and web design experts. A literature review assessed existing networking approaches in the rare disease community. Structured interviews and user journey mapping defined user needs and essential app features. Iterative prototyping and stakeholder discussions informed the final design, which was developed into a functional app launched in December 2023 on major platforms. A survey conducted four months post-launch evaluated user feedback. Data security was prioritized throughout development.

A total of 270 users (approximately 1 in 7 users at the time) participated in the evaluation. Most of them (n=221, 81.9%) registered to connect with others in similar situations, whereas 56.7% (n=153) sought expert input and 44.4% (n=120) looked for disease-related information. The app received positive ratings for usability (mean 6.12, SD 1.03; out of 7), accessibility (mean 5.59, SD 1.22), and design (mean 5.84, SD 1.12), as well as overall impression (mean grade of 2.24, SD 0.90 on a scale from 1-6, with 1 being the best score). Data security was highly rated (mean 5.58, SD 1.15). The app's ontology was suitable for 77% (n=208) of the participants, enabling them to find their diagnosis, and 60.7% (n=164) of users found at least one match. Matching preferences centered on shared diagnosis (mean 82.5, SD 25.1 on a visual analog scale from 0 to 100), symptoms (mean 74.2, SD 25.8), and everyday experiences (mean 69.6, SD 29.5). Overall, users welcomed the opportunity to network with each other securely and highlighted areas for further improvement, such as enhanced matching features and group chat options.

Unrare.me has generated significant interest and engagement within the German rare disease community, serving as a valuable tool for peer support, knowledge sharing, and expert identification. Current challenges include optimizing user acquisition and refining matching algorithms. Planned features include group chats, expert interaction, and gamification elements. Unrare.me illustrates the potential of tailored digital solutions to address unmet needs in the rare disease community.