PatientsForce and the Taiwan Foundation for Rare Disorders bring the 'Scent of Life' into the workplace, driving inclusion and DEI

To deepen inclusion and empathy in corporate culture, PatientsForce (Media Wind Health Group) and the Taiwan Foundation for Rare Disorders (TFRD) have launched a life-education program that brings professionals living with rare diseases into companies and civic organizations. The program recently arrived at Takeda Taiwan, where rare-disease professional Yachi shared her life story in a keynote followed by a hands-on aromatherapy workshop — a genuine connection between industry and an underserved community that lets companies see the challenges, resilience and love behind rare-disease families.

Rewriting fate: facing a one-in-400,000 trial

Before her diagnosis, Yachi was a sunny young woman who loved geography and travel, dreaming of seeing the world — she had visited more than a dozen national parks in the American West, as well as Australia and Japan. At 30, her life quietly turned. Unexplained frequent falls and difficulty boarding buses led to an exhausting journey through hospitals, ending in a diagnosis of Miyoshi myopathy, a condition with a prevalence of roughly one in 400,000.

Miyoshi myopathy is a rare disease caused by a genetic mutation that impairs the dysferlin protein in the cell membrane (the same condition as Taiwan's well-known 'rare angel' Yang Yu-hsin).

• Disease profile: there is currently no curative medication.
• Progression: weakness begins in distal muscles such as the toes and calves and gradually spreads upward to the thighs and hips, eventually taking away independent mobility.

Turning dreams into a journey of scent: creating a 'magic lucky mist' with employees

Facing a disease that slowly takes away physical ability, Yachi refused to surrender. Knowing the condition is progressive, she began preparing early for a future in a wheelchair.

'I refuse to settle in my life. Whatever I do has to be something I love. Even within limits, I want to live out the value of my own life.' With remarkable perseverance — working by day and studying by night — she retrained as a professional aromatherapy instructor, earning three advanced international certifications from the United States, the United Kingdom and France, and founding her own brands, 'Meeting Miyoshi' and 'Star Legacy Academy'.

The disease may have limited her travels, she says, but not her desire to explore the world: 'If I can bring back the fragrances of the places I dreamed of visiting through essential oils, it feels as if I am on that journey myself.'

After sharing her story, Yachi led Takeda Taiwan employees through a hands-on 'magic lucky mist' workshop, blending mandarin and tropical basil essential oils — filling the room with positive energy and a spirit of action.

Deepening corporate DEI: a dialogue between industry and underserved communities

A modern company's value comes not only from professional excellence and commercial performance, but from the empathy and inclusiveness of its people.

PatientsForce and TFRD hope that each of these sincere exchanges lets people with rare diseases speak inside companies, and lets companies become platforms of understanding, inclusion and hope. The two organizations will continue connecting more biomedical and corporate partners to build a more resilient, diverse and warm society of equity for rare-disease families.