JMIR Publications

ABSTRACT

Background:

Rare diseases impact approximately 20 million individuals in Europe, posing unique challenges for patients and their families, including prolonged diagnostic odysseys, limited access to licensed therapies, and significant personal and financial investments to manage daily life with a chronic condition. While resilience-supporting factors such as peer support are available, a dedicated social network connecting patients, caregivers, relatives, and experts is lacking. This manuscript 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.

Objective:

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.

Methods:

This multidisciplinary, multicenter initiative involved collaborations among patient groups, healthcare professionals, psychologists, and webdesign experts. A comprehensive internet research review was conducted to assess existing networking approaches in the rare disease community. Structured interviews and user journey mapping were used to identify user needs and define essential app features. Iterative prototyping and stakeholder discussions led to the final design, which was programmed into a functional app. The app was launched in December 2023 on major platforms. A survey was conducted in the first four months after the launch in order to evaluate user feedback.

Results:

A total of 270 users (every 7th app user at the time) participated in the evaluation. Most of them registered to connect with others in similar situations (81,9%), while 153 sought expert inoput and 120 looked vor disease-related information. The app received positive ratings for usability (M=6.12), accessibility (M=5.59), design (M=5.84), and overall impression (grade 2.24 on a 1-6 scale). Data security was highly rated (M=5.58/7). The app's ontology was suitable for 77.2% of participants, enabling them to find their diagnosis, and 60.7 % of users found at least one match. Matching preferences centered on shared diagnosis (M=82.5), symptoms (M=74.2), and everyday experiences (M=69.6). Overall, users welcomed the opportunity to network with each other securely, and highlighted ares for further improvement, such as enhanced matching features and group chats options.

Conclusions:

Unrare.me demonstrates significant interest and engagement within the German rare disease community. It serves already as a valuable tool for peer support, knowledge sharing, and identifying experts. Challenges include optimizing user acquisition strategies and refining matching algorithms to improve user experience. Future development plans include the addition of group chats, expert interaction features, and gamification elements to enhance platform appeal and functionality. Unrare.me illustrates the potential for tailored digital solutions to address the unmet needs of individuals affected by rare diseases.