Monthly Archives: April 2017

NPO Cure Sarcoma’s 4th Ordinary General Meeting on April 16, 2017

NPO Cure Sarcoma’s 4th ordinary general meeting is to be held as follows:

Time: 1-4:30pm on April 16, 2017 (over-dinner gathering 5:30-7:30 pm) Place: Tokyo Shigoto Center B1 Auditorium Agenda: Part 1- General Meeting (Activity plan, budget, staffing, etc.) Part 2- Seminar and Information Sharing Meeting 1. Seminar by Dr. Takahashi (Director of Sarcoma Center, International University of Health and Welfare, Mita Hospital) on the frontline of sarcoma genome analysis 2. Information sharing among adult soft tissue sarcoma patients and families on their medical treatments

If you are interested in attending our general meeting, seminar, and over-dinner gathering, please contact us at support10@curesarcoma.jp by April 11.

Participated in Ochanomizu Relay for Life (RFL)

NPO Cure Sarcoma attended RFL in Ochanomizu, Tokyo on March 25 and 26.  This was the season’s first RFL and was held in Ochanomizu for the first time. Dr. Nakamura from Chicago University held a lecture seminar.

We plan to attend several other RFLs in 2017. Please join us if you have a chance.

Satellite Symposium of Japan Sarcoma Association and Japan Clinical Sarcoma Association in Tokyo

A satellite symposium of Japan Sarcoma Association was held in Tokyo on December 5, 2016 followed by the main Kyoto conference in the precedent week.

A staff member from Ministry of Health、Labour and Welfare also attended and talked about Japanese version of compassionate use system. However, this system is not well-known yet and has many systematic problems. We would like to have the usage hurdle lowered for the patients.

First General Meeting of Japan Sarcoma Association and Japan Clinical Sarcoma Association in Kyoto

On December 1 & 2 in 2016, the first general meeting of Japan Sarcoma Association and Japan Clinical Sarcoma Association was successfully held in Kyoto. 
This was the first formal conference of two sarcoma associations after our 10 years of preparation work. Wide range of topics were discussed including genome analysis, basic medical science, pathological diagnosis, local control treatment, surgical treatment, medical treatment, clinical tests, survivorship, and so on. Three doctors from US also attended. Over 100 doctors, patients and family members could have close communication at an over-dinner gathering on the first night. NPO Cure Sarcoma supported this conference and also participated in the poster sessions.
In the afternoon of the second day, we held an information sharing meeting among patient and family members. Nearly 50 members attended. The event was quite memorable and we really felt a joy of having this sarcoma patient association network. However, the reality is that 3000-5000 new patients suffer from sarcomas and many of them do not have any contacts with this kind of network. We don’t have enough insurance covered medicine and sarcoma is still far from a curable disease. A lot still needs to be done. We would like to work hard for the next step with a help of all the members.