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!
Bone Cancer Awareness Week 2017
On Sunday 8 October 2017, the Bone Cancer Research Trust will be launching Bone Cancer Awareness Week to raise Bone Cancer Awareness of all nine forms of primary bone cancer and non-cancerous tumours that arise in the bone throughout the week. Awareness of primary bone cancer saves lives. During Bone Cancer Awareness Week Bone Cancer Research Trust wants to reach as many people as possible to raise the profile of this rare and brutal disease.
For more information and to see how you can get involved please see www.bcrt.org.uk/bcaw
"Sarcoma patients. Between health policies and innovation in rare cancers."
This is the theme of the upcoming meeting that will be held on October 6th in Udine, Italy, committed and organized by the “Associazione Paola”, under both the patronage of the President of the Italian Republic and the auspicies of the Italian Society of Medical Oncology.
Innovation, at all levels, from research to care organization, in order to improve the quality of the patient pathway and outcome, will be the topic of the meeting. Researchers and clinicians, together with politicians, at local and European level, will participate. The organization of care, through the newly set up of “Rete Nazionale Tumori Rari” – founded by Paolo Casali- along with the ERNs (EURACAN), will be among the main discussion topics. Moreover, professor Mauro Ferrari, President and CEO of the Houston Methodist Research Institute, will hold a lecture on the development of an innovative drug (iNPG-pDox) which could be used for the treatment of pulmonary metastasis from sarcoma, disclosing new possible and hopeful scenarios for patients.
“Reducing inequalities in the access to available treatments for sarcoma patients, who are reported to have the poorest experiences of any cancer type, is a challenge and a responsibility of all the stakeholders involved. None of these patients should ever feel invisible or neglected", says Ornella Gonzato, president of Associazione Paola.
Please find more information about the event here.
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)
- See a video about the Oncorun
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.