Our member organisations are very active in their countries - we are very proud to present a selection of what is happening for sarcoma and GIST patients in the world. We thank all our organisation for their outstanding commitment!
On Sunday, September 3, 2017, the 10th Jubilee Oncorun Together for Health was held which, like every year, was dedicated to cancer prevention and all people struggling with cancer and their families. There were nearly 2000 participants who covered the lap 750 times (16 447 km) around the Center of Oncology in Warsaw - which resulted in the amount of about 70 000 PLN, which will be allocated to support the neediest patients – charges of Oncorun and also for preventive activities.
On Saturday the 8th July 2017, The Max Foundation arranged a grand celebration of GIST Awareness Day (GAD) for its Support Group Arm Friends of Max at the TATA Memorial Hospital, Mumbai, India.
Do you want to learn more about primary bone cancer? Then have a look at the new magazine of the Bone Cancer Research Trust that was just released end of July for the first time: https://issuu.com/bonecancerresearchtrust/docs/united
The BCRT is a non-profit organization in the UK providing information on all kinds of bone cancers and a full member of SPAEN.
Side effects are practically inevitable, but can affect a patient’s quality of life and ability to maintain their drug regimen immensely. Therefore, the Life Raft Group, a patient group with a focus on GIST, set up a free tool to help patients gain valuable insights into symptoms and side effects management: SideEQ.
Only this year, the National Leiomyosarcoma Foundation announced a collaboration with the Life Raft Group on this specific project, allowing also LMS patient to profit from this tool. For more information, please check out the website: https://www.mysideeq.org/
Both organisations are non-profit organizations based in the USA and full members of Sarcoma Patients EuroNet (SPAEN).
New patient organization in The Netherlands
One picture says it all: The Max Foundation and Friends of Max, India
The Max Foundation together with The Friends of Max held the Mumbai City Chapter Meet at the Tata Memorial Hospital on Sunday 14th May with over 230 participants, the physicians Dr Manju Sengar and Dr Suresh Advani and the Volunteers and the Max Foundation team, that made it all possible.
Find Friends of Max here.
On May 20, 2017, the first ever EEA (English East Africa) International PAG (Patient Advocacy Group) Summit was held in Nairobi, Kenya. It was attended by over 160 CML, GIST and sarcoma patients from Kenya, Sudan and Ethiopia.
The aim of the summit was to bring together patient leaders from Eastern Africa to share and learn from each other, but also to address the challenges the group and the region is facing. A working group was formed responsible for spearheading communication and activities across the region.
Please find more information about Henzo Kenya here.