facebooktwitterSocial Media Logos grau instagramm

Together We Can Make A Difference
For Those Affected By Sarcomas!

Home

Member activities

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!

 

September 2017

OnkobiegLargest Oncorun in Poland held for 10th time

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.

Please read more here: http://www.onkobieg.pl/ and in the pdf Oncorun Report (260 KB)

 

July 2017

GIST Awareness Day Celebration, Friends of MaxFOM GAD2

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.

GAD is an annual event in July celebrating the survivors of the rare cancer GIST. This was the fourth year of celebrations. Find out more here.

 FOM GAD1

Viji Venkatesh (The Max Foundation), Dr. Nikhil Guhagarkar (Friends of Max) and Vandana Gupta (V Care / SPANDAN)

 

 

July 2017

United BCRTUnited – the new magazine of the Bone Cancer Research Trust

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.

 

 

 2016/2017

SideEQ

sideEQ alt

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).

 

 

June 2017

logo patientenplatform sarcomen website 300x95New patient organization in The Netherlands

The Dutch organizations for GIST and Sarcoma have decided to merge their groups in one and now offer information and support for sarcoma, GIST, chordoma patients. Find the profile here.

 

 

May 2017

Friends of Max

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.

 

 

May 2017

Henzo Kenya members 1English East Africa International Patient Advocacy Group Summit held by Henzo Kenya

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.