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Sarcoma Patients EuroNet - Newsletter No. 1/2019
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Dear SPAEN members and friends,
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Sarcomas and GIST are rare, knowledge is limited and research is under-funded – there’s a lot to do! However, it is amazing how much members of our network have already achieved! Here is one great example from the group “Fundación GIST Chile”: Read Piga’s story and her march towards a “National Cancer Law” in Chile - and let yourself be inspired!
Warmly,
The SPAEN Board of Directors & Team
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Our 9th SPAEN Annual conference 2019 in Athens/Greece
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February 1-3, 2109, we held our 9th SPAEN Annual Conference in Athens, Greece – once again a wonderful opportunity to learn from renowned sarcoma experts and share experiences with other patient advocates.
Want to know more?
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Watch this video and maybe you'll join us next year?
- Interested in what has been presented? Download presentations here.
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Sarcoma Advocacy in Action Award: And the winner is...
Patient advocacy ensures that people are heard, take action and ultimately improve situations. The projects that were entered for the "Sarcoma Advocacy in Action Award 2018" once again showed this impressively!
Read more here!
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New staging system for soft tissue sarcoma of the head and neck
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The tumor, node, metastases (TNM) anatomic staging system plays a pivotal role in cancer care, research, and cancer control activities. For 40 years, all soft tissue sarcoma (STS) used the same TNM where T1 was <=5 cm. However, this staging is unsuited for STS of the head and neck (STSHN) since only a minority are >5 cm. Therefore, a new staging system for STSHN has been introduced. Read the full publication here.
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Olaratumab (Lartruvo®): Phase III study did not meet primary endpoint of overall survival (OS)
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In late January this year, Lilly reported Phase III results of olaratumab in STS. The benefit of overall survival (OS) seen in Phase II for olaratumab+doxorubicin vs. doxorubicin alone could not be confirmed – not for the whole study population nor in the leiomyosarcoma subgroup. Following these results, official authorities recommend that no new patients should start treatment with the medicine.
Read Lilly’s official press release and the statement of the European Medicines Agency EMA.
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FDA approval for Larotrectinib in solid tumors incl. sarcomas with NTRK gene fusion
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FDA approves Larotrectinib for adult and pediatric patients with solid tumors that have a neurotrophic receptor tyrosine kinase (NTRK) gene fusion. Tumor types responding to larotrectinib include soft tissue sarcoma and infantile fibrosarcoma. Please find further information here.
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REGOBONE: Regorafenib shows efficacy in advanced osteosarcoma
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A Phase II study recently showed that regorafenib demonstrated clinically meaningful antitumour activity in adult patients with recurrent, progressive, metastatic osteosarcoma after failure of conventional chemotherapy. Researchers recommend to further evaluate regorafenib in osteosarcomas. Read more.
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Commentary: Pazopanib in soft-tissue sarcoma – experience at multidisciplinary sarcoma centers
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Pazopanib is approved for the treatment of patients with advanced STS who received prior chemotherapy. This commentary describes the current treatment landscape for patients with advanced STS undergoing chemotherapy as well as how pazopanib has been incorporated into treatment for different subtypes of STS in clinical practice.
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TAPPAS: Phase III trial to evaluate TRC105 plus pazopanib in advanced angiosarcomas
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The TAPPAS study wants to answer the question whether or not the addition of the new compound TRC105 (carotuximab) to the VEGF inhibitor pazopanib is favorable for patients with unresectable angiosarcoma. The study is open and recruiting. Find more information here.
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CTOS 2018, November 14-17, 2018
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Avapritinib could deliver precision medicine to patients with GIST. Read more.
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Crizotinib demonstrates important clinical activity in advanced, inoperable inflammatory myofibroblastic tumor (IMFT). Read more.
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Immunotherapy effective in Alveolar Soft Part Sarcoma (ASPS). Read more.
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Piga Fernandez, Fundación GIST Chile: March for a National Cancer Law in Chile
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In December 2018, Chile’s president Sebastián Piñera signed a National Cancer Plan and a National Cancer Law. This huge step for cancer patients in Chile was the work of group of cancer patient advocates.
Piga Fernandez, patient advocate for Alianza GIST (the South American GIST cancer coalition), for Fundación GIST Chile and a GIST patient herself was a driving force to achieve this so important goal.
Read her story here.
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GIST Support UK: Videos from patient meeting
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In October 2018, GIST Support UK hosted another patient and carer meeting in Manchester. Videos from the presentations are available online for everybody to watch. Have a look here.
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The Bone Cancer Research Trust held first International Osteosarcoma Research Symposium
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End of January 2019, BCRT held their first ever International Osteosarcoma Research Symposium, together with Children with Cancer UK.
The event brought together researchers from across the globe to identify research progress, challenges that need to be overcome and opportunities to move research forward. Read BCRT’s summary here and don’t forget to have a look at all the interesting videos.
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“Onkobieg”, the Polish OncoRun helped patients receive new protheses
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The Polish Oncorun “Together for Health” is an annual event in early September. It is also a fundraising event to support the neediest patients. In 2018, new prothesis could be provided to patients, among them Jakub and Kacper, who were diagnosed with cancer very early in life. Both took part in Judo training - a touching and energetic meeting, have a look for yourself here.
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Assessment of quality of life in sarcomas: Incorporating the patient voice
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Dr. Olga Husson and Professor Dr. Winette van der Graaf, The Netherlands/UK aim to develop an instrument to assess health-related quality of life among sarcoma patients for use in research and clinical care. And you can be part of it! For this project sarcoma patients from all over Europe will be interviewed. If you are interested, have a look here. |
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European School of Soft Tissue Sarcoma Surgery
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The European School of Soft Tissue Sarcoma Surgery is a joint venture of ESSO (European Society of Surgical Oncology), CTOS (Connective Tissue Oncology Society) and European reference centers specialised in the treatment of soft tissue sarcoma (STS). It has developed training courses to certify proficient knowledge of participants in the scientific basis and clinical practice of STS care, specifically multidisciplinary decision making and surgical management. Find further information here.
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Great Debates in Oncology: The use of adjuvant/neoadjuvant chemotherapy in soft tissue sarcoma
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In this interactive debate series, oncology experts from around the globe assemble to exchange their views on topical issues in oncology. In this debate mediated by Brian Van Tine, experts Jonathan Trent, and Robin Jones discussed the use of adjuvant and neoadjuvant chemotherapy in patients with soft-tissue sarcoma. Watch here.
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AAOS announces Musculoskeletal Tumor (MsT) Registry Pilot
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The American Academy of Orthopaedic Surgeons (AAOS) announced the launch of a Musculoskeletal Tumor (MsT) Registry in the US. The MsT registry will focus on tracking function, complications, and outcomes in patients treated for a bone or soft tissue sarcoma. Read the press release here.
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WECAN: Guiding Principles on Reasonable Agreements between Patient Advocates and Pharmaceutical Companies
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The project is analysing legal contracts between patient organisations and pharmaceutical companies, with the aim of evaluating the content of their clauses bearing in mind what a reasonable contract should look like. The main goal is that patient advocates and patient organisations will collaborate with pharmaceutical companies to develop tools that can make the legal relationship between both parties easier and more acceptable. Learn more. |
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https://www.emsos2019.eu/node/18COURSE: A multidisciplinary approach to the diagnosis of bone tumours, March 25-27, 2019, Leiden, The Netherlands
XXXII Course on Musculoskeletal Pathology,
April 8-12, 2019, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy: www.musculoskeletalpathologycourse.it
GIST NEW HORIZONS,
May 8-10, 2019, New Jersey, USA
5th EORTC Quality of Life in Cancer Clinical Trials Conference,
May 16-17, 2019, Brussels, Belgium:
http://events.eortc.org/wpmulti/qol-conference-2019/
European Musculo-Skeletal Oncology Society (EMSOS),
May 15-17, 2019, Florence, ltaly: https://www.emsos2019.eu/node/18
SIOP Europe 2019 Annual Meeting,
May 20-24, 2019, Prague, Czech Republic:
https://www.siope.eu/activities/siopes-upcoming-events/siope-2019-congress/
2019 ASCO Annual Meeting,
May 31 – June 4, 2019, Chicago, USA:
https://meetings.asco.org/am/register-submit-abstracts
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ABOUT SPAEN
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Sarcoma Patients EuroNet Association (SPAEN), the international Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups, was founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe and internationally. Acting in partnership with clinical experts, scientific researchers, industry and other stakeholders SPAEN is working to improve the treatment and care of sarcoma patients through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.
Together We Can Make A Difference
For Those Affected By Sarcomas!
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SPAEN CONTACT
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SPAEN Secretariat
Am Rothenanger 1b, 85521 Riemerling, Germany
Tel: +49 89 62836807, Fax +49 89 62836808
Email: info@sarcoma-patients.eu
Web: www.sarcoma-patients.eu
SPAEN Communications
Kathrin Schuster
kathrin.schuster@sarcoma-patients.eu
SPAEN Registered Office:
Untergasse 36 * 61200 Wölfersheim/Germany
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