To deepen the value of inclusion and empathy in corporate culture, PatientsForce has launched a deep collaboration with the Rare Disease Foundation (TFRD), jointly promoting the life education program “Rare Disease Professionals Enter Companies and Civil Organizations.” Recently, this project successfully brought this warmth and inspiration to Takeda Taiwan, inviting rare disease artisan Yaqi to give in-depth talks and share essential oil crafts with corporate colleagues. We hope that by substantively connecting industry and social disadvantaged groups, companies can see the challenges, fearless resilience, and love of life behind families with rare diseases.

Flip the Script of Fate: Face the Rare Trial of One in 400,000

Before being diagnosed, Yaqi, a rare disease specialist, was a sunny girl who loved geography and travel. She once dreamed of traveling the world, visiting more than a dozen national parks in the western US, Australia, and Japan. However, life quietly took a turn at the age of 30. After enduring the torment of seeking medical help from various places in daily life, including unexplained frequent falls and difficulty getting on and off buses, she was ultimately diagnosed with ‘Miyoshi’s Distal Myasthenia,’ a disease with a prevalence of only about one in 400,000 .

Miyoshi Myopathy is a rare disease caused by a gene mutation that causes a deficiency of the ‘Dysferlin’ protein on cell membranes (also known to the public as the ‘rare angel’ Yang Yuxin).

• Disease characteristics: Currently, there is no curative drug available in medicine.
• Degenerative path: Muscle weakness symptoms start in distal muscles such as the toes and calves, gradually spreading upward to the thighs and buttocks, eventually leading to complete loss of independent mobility.

Turning Dreams into a Fragrant Journey: Professional Aromatherapists and Companies Co-Create the ‘Magic Lucky Spray’

Facing the cruel verdict of illness gradually stripping her physical abilities, Yaqi refused to compromise with fate. Recognizing the gradual progression of the illness, she decided to prepare early for the future of using a wheelchair.

“I don’t want to settle for my life. Whatever I do, I have to do it in ways I enjoy. I hope that, within limited limits, I can still live out the value of my own life!” Yaqi demonstrated remarkable perseverance, staying at her post during the day and continuing her studies at night, eventually successfully transitioning to become a professional aromatherapy instructor. She not only obtained three advanced international aromatherapy licenses from the US, UK, and France, but also founded personal brands such as ‘Meet Miyoshi’ and ‘Star Chuan Academy,’ using her talent to redefine the value of life.

Yaqi emotionally stated that although illness limited her pace of traveling abroad, it could not limit her desire to explore the world: “If I can bring back my dream of traveling the world through essential oils, it would feel as if I am actually on this journey myself.”

After sharing touching life stories, Yaqi brought this “life-transforming magical fragrance” into the event venue, leading colleagues from Takeda Taiwan in hands-on experience with the “Magic Luck Spray.” By blending mandarin and tropical basil essential oils, we brought positive energy and motivation to action to the attendees.

Deepening Corporate DEI Values: Connecting Dialogue Between Various Sectors and Socially Disadvantaged Groups

The value of modern enterprises comes not only from outstanding professional skills and business performance, but also from empathy and inclusiveness within the organization.

PatientsForce and the Rare Disease Foundation hope that through every sincere cross-industry corporate exchange, patients with rare diseases can enter companies and speak out, making the company a friendly platform that carries understanding, inclusion, and hope. In the future, both parties will continue to connect more biomedical industry and corporate partners to jointly create a more resilient, diverse, and warm equality and inclusive society for families with rare diseases.