26/11/2025
🌜🍽️Let’s Talk Rare: Dinner Talk🍽️🌛
Hosted by :
PharmNotts Student Association &
Malaysian Rare Disorders Society
Last night’s event was one of the most refreshingly curated academic gatherings I’ve attended. A full 3-course dinner, served thoughtfully between sessions, while patients, families, advocates, and clinicians shared their stories and expertise. It was intimate, honest, and deeply human.
I spoke about lipedema—the often misunderstood disease that leaves many women dismissed as “just fat”—and shared the lived experiences of my patients who battle pain, stigma, and misdiagnosis for years before finally receiving answers.
During the closing segment, each speaker was invited to share one word that encapsulates our experience working with rare disorder patients.
I chose: Support.
Because support isn’t just medical.
It is family support, societal support, policy support, and community support.
Physicians meet patients for an hour at a time—but the people who are around them through the hardest days are the ones who stand beside them for a lifetime.
It was also my first time learning in depth about the Malaysian Rare Disorders Society — a truly crucial organisation helping build a more compassionate Malaysia. A Malaysia that sees individuals beyond their diagnoses, and recognises their aspirations, dignity, and humanity.
And a special note to the students:
In an era where AI will democratise information, it is your creativity, empathy, and ability to move as humans that will set you apart. Watching how thoughtfully and innovatively this event was put together… I can say the future of healthcare is in good hands.
Thank you for having me. 💙
Until the next one.