PatientsForce joins the Rare Disease Foundation to bring the 'fragrance of life' into companies, driving inclusion and diversity

To deepen the values of inclusion and empathy in corporate culture, Media-WIND Health Group (MWHG) (PatientsForce) and the Taiwan Foundation for Rare Disorders (TFRD) have formed a close partnership to advance a life-education initiative that brings "rare disease professionals into companies and community organizations." Recently, the program brought this warmth and inspiration to Takeda Taiwan, inviting rare disease professional Ya-Chi to give an in-depth talk and lead a hands-on essential oil workshop with employees. Through this genuine connection between industry and society's most vulnerable, the initiative aims to show companies the challenges, fearless resilience, and love of life behind rare disease families.

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

Before her diagnosis, Ya-Chi was a sunny young woman who loved geography and travel, dreaming of seeing the world—her footsteps had covered more than a dozen national parks in the American West, plus Australia and Japan. But at 30, her life quietly turned. From unexplained frequent falls in daily life and difficulty boarding buses, and after the ordeal of seeking answers from doctor after doctor, she was finally diagnosed with Miyoshi myopathy, a condition with a prevalence of only about one in 400,000.

Miyoshi myopathy is a rare disease caused by a genetic mutation that leads to a deficiency of the "Dysferlin" protein in the cell membrane (the same condition affecting Yang Yu-Hsin, widely known as Taiwan's "rare angel").

Disease profile: there is currently no curative treatment in medicine.
Progression: muscle weakness begins in distal muscles such as the toes and calves, gradually spreading upward to the thighs and hips, ultimately leaving patients unable to move independently.

Turning dreams into a fragrant journey: a professional aromatherapist co-creates a "magic lucky spray" with employees

Faced with the cruel verdict of a disease steadily stripping away her physical abilities, Ya-Chi refused to surrender to fate. Recognizing the progressive nature of her condition, she decided to prepare early for a future in a wheelchair.

"I don't want to settle in my life. Whatever I do, it has to be something I love. Within my limits, I still hope to live out the value of my own life!" With remarkable determination, Ya-Chi held down her day job while studying at night, ultimately transitioning into a professional aromatherapy instructor. She earned three advanced international aromatherapy certifications—from the United States, the United Kingdom, and France—in one sweep, and founded personal brands including "Meeting Miyoshi" and "Star Legend Academy," redefining her life's value through sheer ability.

Ya-Chi reflected movingly that although the disease has limited her ability to travel abroad, it cannot confine her desire to explore the world: "If I can take my old dream of traveling the world and bring those fragrances back through essential oils, it feels as if I am truly on that journey myself."

After sharing her moving life story, Ya-Chi brought this "life-transforming magic fragrance" to the event, leading Takeda Taiwan employees through a hands-on "magic lucky spray" workshop. Blending mandarin and tropical basil essential oils, she filled the room with positive energy and the drive to act.

Deepening corporate DEI values: connecting communities in a dialogue with society's most vulnerable

The value of a modern company comes not only from professional excellence and business performance, but from the empathy and inclusiveness within the organization.

Media-WIND Health Group (MWHG) (PatientsForce) and the Taiwan Foundation for Rare Disorders hope that through each sincere cross-sector exchange, rare disease patients can step into companies and be heard, and companies can become welcoming platforms for understanding, inclusion, and hope. Going forward, the two partners will continue connecting more biomedical industry and corporate partners to build a more resilient, diverse, and warm society of equity and inclusion for rare disease families.