- WHO WE ARE
- HOW CWMSG STARTED
- OUR SERVICES
- SUPPORT CWMSG
China Waldenstrom’s Macroglobulinemia Support Group (CWMSG), is a self-managed organization for and by WM/LPL patients and caregivers in China. CWMSG is devoted to helping members by providing educational programs and peer supports. Our aim is to make possible for every WMer living long with WM/LPL disease together in a high-quality life.
CWMSG was launched by Roger Yao whose father had been diagnosed as WM in 2017. Went through the difficult time: lacking educational material for this rare disease, confusion of different therapeutic regimen, and emotional anxiety for both patient and caregiver, Roger realized the necessity of establishing a WM support group in China. Soon, along with a few WMers, we started a WECHAT discussion group for WMers, and recruited volunteers (Qiangziqing, Dudu, Zhoujiali, Yiyuan, Weiyue, and Lao Ge) to collect WM educational material, translate related English articles into Chinese, share them online (website, Weibo, WECHAT, Facebook…). Volunteers also helped to comfort patients with anxiety especially for those who were newly-diagnosed.
In April 2018, CWMSG was accepted by IWMF (International Waldenstrom’s Macroglobulinemia Foundation) as its 17th international WM support group affiliate. In May 2018, Roger Yao, as the support group leader, attended IWMF patient educational forum and IWMF support group leader meeting in Chicago, US. Therefore, CWMSG established the communication channel with WM support groups from other counties including US, UK, Australia, India…
Currently, because of limited resources, CWMSG mainly focuses on:
● Collect, sort, translate, and share educational materials to WM/LPL patients
● Guide and share experiences for newly-diagnosed patients or who needs help
● Psychological intervention for the depressed, or ones with anxiety
● Appeal to government for attention of this rare disease’s policy making
CWMSG is a Non-profit organization, established and operated by WM patients and caregivers. Currently, CWMSG does not have any finance support from neither government nor any organizations. Therefore, we cannot afford any paid-staff, and all the work are done by volunteers right now.
However, we have received a small amount of donation from our support group members even though they themselves are in difficult financial situation because of tremendously high cost for treatment and medicine. These donations have been used for basic operation, such as website maintenance, server rent, printing material, etc. For future, CWMSG is going to develop more services in order to support those who suffer from this rare disease. Your talent and generosity will help us go further.
If you want to join us as volunteer or would like to support us by donating, pls contact us at firstname.lastname@example.org or WECHAT/WhatsApp: 0086 1391 8486140