In this brief memoir, IORD Secretary Dr. Krishnaji Rao reflects on his personal journey into rare diseases, guided by hope and driven by advocacy.
There are moments in life when destiny does not shout, but whispers—softly, yet so powerfully that ignoring it feels impossible. For me, that whisper was rare diseases.
For years, I lived the life of an academic, a teacher, a leader, a pharma innovator, a health advocate. My days were filled with responsibilities, recognition, and milestones that society would call success. And yet, in the quiet moments, I often asked myself: What is the true purpose of my journey?
The answer came not from books or conferences, but from the unheard voices around me.
Families wandering from hospital to hospital, searching for a diagnosis that never came.
Mothers sitting awake at night, holding fragile children and asking, “Why us?”
Fathers selling everything they owned to chase treatments that did not exist.
Children—brave, beautiful children—who carried their suffering in silence as the world hurried past, unaware.
It was then that I realised: these were not just patients. These were warriors. And they needed allies.
When I stepped into the role of Secretary of the Indian Organisation for Rare Diseases (IORD), under the inspiring leadership of Prof. Dr. Ramaiah Muthyala—the Father of the Rare Disease movement in India, I understood I was not accepting an office. I was embracing a sacred responsibility.
IORD’s mission is profound yet simple:
- To give a voice to the voiceless.
- To make the invisible visible by spreading awareness.
- To advocate for policies that restore dignity, care, and treatment.
- To build a community of support, so no family ever feels alone.
This mission has redefined my very meaning of leadership. Leadership, I have learned, is not about titles, awards, or recognition. It is about carrying stories into the rooms where decisions are made. It is about turning statistics into lives—precious lives, each one worth fighting for.
The journey is not easy. At times, it feels like moving mountains with bare hands—battling silence, indifference, and systemic neglect. But every time a child is finally recognised, every time a mother whispers, “At least someone is listening,” every time a father says, “We are not alone anymore,” I know the struggle is not only worth it—it is necessary.
Because rare diseases are not rare when you live them. They are everywhere—hidden in the shadows, waiting for light.
For me, that light is IORD. And through IORD, I have found my life’s purpose: to carry hope where it has long been forgotten.
This is not just my mission—it is our mission. A mission of families who refuse to give up, of voices that rise against silence, of a society that must be tested not only by how it treats the many, but how it protects the few.
Common diseases may affect numbers. But rare diseases test the conscience of humanity.
And I have chosen to stand with conscience—with courage, with compassion, and with conviction.
This is not only the journey I live.
This is the cause I serve.
This is the legacy I will carry forward—for as long as I have breath.
Because to make the rare recognised is not just medicine—it is justice.
“Don’t fear the Rare — cuddle life with joy and smile “
— Dr. Ramaiah Muthyala
September 03, 2025
