Abstract
Background: Community engagement is essential in rare disease management, particularly in developing countries with limited access to resources and information. This paper presents the findings of a 2-year Vietnamese ALS community engagement initiative and the lessons learned from implementing the program. Methods: In June 2021, community engagement platforms for ALS comprised a website and a Facebook page. The platform aimed to provide reliable information, guidelines and tips for handling the difficulties of ALS. Initially, the format was article writing with illustrations, followed by more engaging formats such as podcast series and daily posters. Data were collected on website sessions and Facebook page metrics. Results: The platform had 5,571 sessions, with the top acquisition channel being organic search, followed by social media and direct search. The average time spent on the page was 2 minutes and 41 seconds. The Facebook page reached 22,423 users, with 1,196 reactions, likes, comments, and shares. Conclusion: Community engagement initiatives for rare disease management require consistency and high-quality content. Using engaging and accessible media like podcasts and videos can effectively disseminate information to target audiences. It's crucial to tailor content delivery to specific needs and address financial challenges. The Vietnamese ALS initiative demonstrated the importance of community engagement in developing countries and provided a framework for improving patients' quality of life with rare diseases in other settings.
