Rare Disease Day: How one marriage thrived through rare diseases
On March 10, 2021, CMIC Group in collaboration with RDD Japan and the tenant companies of Hamamatsucho building hosted a webinar in support for Rare Disease Day. Rare Disease Day (RDD) first began in 2008 in Sweden with the goal of improving the quality of life for patients with rare and intractable diseases through better treatment and diagnosing. Rare Diseases are defined by the small number of patients effected by a particular diagnosis, leading to limited awareness and understanding.
Japan’s Hamamatsucho Consortium supports RDD by hosting an annual event promoting education and exposure to these patients and diseases. This year we hosted a webinar, “Nanbyo (Rare Disease) Marriage” featuring two speakers, a husband and wife, both living with rare diseases.
Hidenori Wakui, diagnosed with relapsing polychondritis (RP), and Miki Wakui, with Isaacs Syndrome, are both rare disease patients. This webinar not only deepened our understanding of their diseases, but also gave us a glimpse into the lives of patients with rare diseases.
Mr. and Mrs. Wakui presented their story including how they met, their marriage, and what their lives are like with rare diseases. This webinar generated the interest of over 500 attendees, majority of which provided feedback on their understanding of rare disease, and how this webinar impacted that.
At the start of the presentation, the overwhelming majority of attendees were under the impression that people with rare diseases have a difficult living, such as being unable to walk or being bed ridden. Following the Wakui’s presentation, 96% of attendees changed their perspective to people with rare diseases being able to live fulfilling and positive lives, despite having health concerns.
Patient advocacy benefits not just the patient. Here are a few quotes from the webinar attendees:
“My child has a disability, and almost every day she is not feeling well, but Mr. and Mrs. Wakui enjoyed their daily lives while taking measures in advance to prevent their condition from getting worse, and they also found a wonderful lifetime partner who can take care of each other, so I was able to have hope. I will do my best as a model. Thank you very much.”
“I was struck by the answer, “I want to work, and I want to contribute to society.” I thought about how important daily life is. Thank you very much.”
CMIC Group’s support of Rare Disease Day is an honor and priority. We are proud to participate in Rare Disease Day and will continue to advocate for this grossly underrepresented population. CMIC Group works daily to support drug development, delivery, and commercialization with these patients in mind, and we value the role we are able to play to improve lives.
Interested in watching this webinar? *OnDemand webinar is available only in Japanese
https://rddhamasmile.sakura.ne.jp/
