The role of medical students in advocacy for rare diseases – Experience from a Low- and Middle-Income Country (LMIC)

Abstract

2023 marks the Year of the Zebra, a year to celebrate hope for those with rare diseases. While each individual rare disease affects few, collectively everyone living with a rare disease makes up a total of over 300 million people worldwide. The annual celebration of rare disease day allows communities to advocate for visibility, inclusion and better healthcare for those with lesser well known conditions. Having a rare disease and living in a developing country like Pakistan, where quality healthcare is itself a rare commodity, predisposes those with rare diseases to many challenges. In this light, learning from patient journeys and advocating for rare diseases is a step in the right direction to better care. In this short communication, we share experiences from Pakistan of medical students spearheading one such effort as stakeholders in the care for rare. We also discuss the importance of teaching health advocacy as part of the medical education framework, helping nurture empathy in medical students, who we hope to be leaders of better care in the future.

Keywords

• Rare diseases
• Medical students
• Health advocacy
• Pakistan
• LMIC