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!
October 2017 / January 2018
NEW HORIZONS GIST 2017
New Horizons GIST is a conference that traditionally focuses on a large annual conference gathering over 50 representatives from 30 countries to discuss critical information about GIST that impacts the global GIST patient and medical communities.
The NEW HORIZONS GIST 2017 conference was held in Wayne, New Jersey, USA from October 1-3, 2017. The Conference Report as well as presentations and pictures are available on the website of the Life Raft Group, organizer of the conference in 2017.
More information about NEW HORIZONS can be found here.
Dr. Nikhil Guhagarkar, GIST patient from Mumbai, India, speaks about the holistic approach he took when diagnosed with GIST, with a special focus on nutrition and healthy living with GIST. The webcast was produced in cooperation with the Life Raft Group and can be accessed here: https://cc.readytalk.com/cc/playback/Playback.do?id=6z5bb5 (no password necessary, just type in your name).
“Harvesting Patient-generated information from internet discussion forums”, CTOS 2017
During the CTOS (Connective Tissue Oncology Society) 2017 conference in Maui, Hawaii, SPAEN Board member and Chairman of the Dutch sarcoma patient platform Gerard van Oortmerssen gave a presentation on a project aiming at harvesting information from patient discussions on the Internet. Read more.
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 meeting 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.
“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.
From “neglected diseases” to “a sea of opportunity”, searching for innovative solutions in order to reduce, as much as possible, the 5-year overall survival rate gap between rare cancers and common ones. This is what emerged at the end of the meeting, entitled “Sarcoma patients. Between health policies and innovation in rare cancers”, held in Udine (Italy) on October 6th, committed and organized by Associazione Paola per i tumori muscolo-scheletrici.Onlus.
“The main topic was innovation at all levels in order to find new and appropriate solutions to assure the quality of care, avoiding any risk of discrimination for patients, due to the rarity of these diseases. At the same time, innovation requires both attention and support by health policies to better integrate it into national cancer plans.“ said Ornella Gonzato, founder and president of Associazione Paola.
Firstly, innovation in the organization of care through the newly set up of “Rete Nazionale Tumori Rari (RNTR)”. “The first question posed by rare cancer patients is where to be treated instead of how to be treated. The Rete Nazionale Tumori Rari can give the correct answer, both referring patients to an appropriate centre of expertise and avoiding migrations, if not strictly necessary ”, affirmed Paolo Casali, the founder of the RNTR. Innovation in the organization of care is also related to the identification of the referral centres, already included in the EURACAN, which will then be part of the RNTR.
Innovation regarding surgical treatments by using even more suitable new materials and new technologies for bone segment reconstruction, results in shortening surgical time and improving functional results and quality of life.
Innovation meant as patient empowerment in order to make them more aware and involved in their own disease pathway; this is valuable especially in rare cancer patients because they address a higher degree of uncertainty than those affected by common cancers.
Innovation in research, as pointed out by a member of the European Parliament (MEP) Isabella De Monte “a field in which both the scientific and the political world must commit to and invest, especially when it comes to rarer diseases".
“Both basic and translational research, that is the research required to bring new scientific findings to clinical trials (from the bench to the bed-side), crossing the so-called valley of depth, need greater incentives, together with new development models, involving profit and no-profit partnerships, as it happens through venture-philanthropy models", underlined Ornella Gonzato.
Moreover, innovation concerning both clinical research methodology and regulatory pathways, in order to be more flexible and appropriate for rare cancer patients.
And furthermore, innovation in new drugs in development, such as iNPG-pDox, for the treatment of pulmonary metastasis from sarcoma. Its “mechanism of action is completely innovative and not comparable to any other existing drug at the moment”, as referred by professor Mauro Ferrari, President and CEO of the Methodist Research Institute, disclosing new possible and hopeful scenarios for patients.
“All these efforts foster rare cancer patients’ hope even if several challenges still exist, which require us to keep high our commitment and attention”, stated Ornella Gonzato
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.