OrphanPacific/CMIC Group sponsors “Rare Disease Day 2019” in Japan.
Rare Disease Day (RDD) campaign aims to improve the quality of life for patients with rare / refractory diseases throughby better diagnosis and treatment. The activities started in 2008 originating from Sweden, and have been extended to a total of 100 countries.
In Japan, RDD events are held nationwide on the last day of February and this annual campaign has been running since 2010. Our theme for the year is “Today, Tomorrow and the Future – the 10th Anniversary of RDD Japan –”
There are over 7,000 types of rare diseases, but it often takes about 5 years on average until the correct diagnosis due to unfamiliarity of such diseases. Patients typically change hospitals at least seven times until they reach the point of proper diagnosis. In addition, challenges lie in solving issues such as the stagnated development of rare disease treatment and the painstaking experience of rare disease patients due to the lack of understanding by surrounding people.
For RDD campaign in 2019, in addition to sponsoring events, CMIC will internally publicize February as the month of RDD campaign, involving activities such as raising awareness through putting in-house posters, seminar event for listening to direct voices from rare disease patient and educating employees through a dedicated site on the intranet and in-house SNS for enhancing the knowledge of rare diseases. We are working to create a system where employees can make donations easily.
During this campaign, all OraphanPacific/CMIC members are encouraged to wear the RDD official pin badge and hand out the CMIC group’s original RDD pocket-sized tissue packages to clients, business partners, family members and friends for RDD activity promotion. We expect the "Connecting power (TSUNAGARU-CHIKARA)" will grow into a bigger activity.
Beginning this year, we have also started on a new initiative to expand the scope of our activities. We are holding seminars and events targeting at people who work for fellow companies in Hamamatsucho Building, where OrphanPacific/CMIC Group’s headquarters is located.