In this episode of EURORDIS Rare on Air, host Julien Poulain speaks with Zainab Alani, a medical student at the University of Glasgow and an advocate for rare disease patients. Zainab shares her personal journey with myasthenia gravis, a rare autoimmune disorder that began affecting her at the age of 15. Despite her mother, a general practitioner, recognising the early signs, Zainab faced scepticism from healthcare professionals, leading to a delayed diagnosis.

For three years, Zainab chose to keep her diagnosis private, revealing it only to her immediate family. She shares the reasons that had underpinned this decision.

The episode highlights the cultural and educational gaps in rare disease healthcare, the emotional impact of how a diagnosis is delivered, and the critical role of family support. Zainab also discusses her advocacy work, including her Instagram @themyasthenicmedic, where she raises awareness of invisible disabilities and calls for improved rare disease education in medical schools.

Join the conversation using #EurordisRareOnAir or contact the podcast via RareOnAir@eurordis.org.