Rare diseases are defined as conditions affecting fewer than 1 in 2,000 people in any WHO region (under 65 per 100,000 individuals). These include rare genetic disorders, cancers, infections, poisonings, immune-related conditions, idiopathic diseases, and other undiagnosed or unexplained conditions.

A major challenge in addressing rare diseases is the lack of comprehensive data. Caregivers, especially family
members, face numerous unmet needs—ranging from delayed diagnoses and limited access to specialists, to difficulties in obtaining appropriate treatments. Even with a diagnosis, clinical care is often inadequate. The social and emotional toll on families adds to the long-standing public
health burden.

To explore these issues, HITLAB conducted stakeholder interviews to better understand caregiver needs, data gaps, and system-level challenges. These insights are informing the development of MiraKare’s caregiver support platform, helping refine its design to improve outcomes for both patients and their caregivers.