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Sarcoma Patients EuroNet Newsletter No. 1/2018
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Dear SPAEN members and friends,
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it’s nearly a year now that we launched our new International Sarcoma Patients Online Platform. Since then we added a lot of information and content. But one of our highlights were certainly the “eCademies” – information about GIST, sarcomas, desmoids and bone cancer in patient-friendly language. Thanks to the fantastic support of our member groups and other volunteers, we are able to provide this information in several different languages: English, French, German, Italian, Spanish, Japanese and Polish. Hebrew will follow soon – along with others.
We’d like to take the opportunity to thank all those who took the time to do the translations out of their mostly very busy schedules:
We couldn’t have done it without you – thank you so much for your work and commitment to our common cause!
More to come on our website this year – stay tuned and don’t forget to follow us on Twitter and Facebook!
Kind regards,
the SPAEN Board of Directors & team
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ADVOCACY IN ACTION AWARD
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Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We believe it is time to shout out about how important patient advocacy in sarcomas is!
We therefore invited all our member groups to participate in the “SPAEN Advocacy in Action Award 2017” and have received incredible applications – thanks to all who participated.
The winning projects will be announced during our SPAEN Annual conference in February 2018 in Milan!
More information about the Award can be found here. |
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Book voices of courage and hope – Call to action
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Cancer patients know and have experienced that it can be not only helpful, but truly empowering to be part of patient community such as SPAEN. We would like to spread this inspiring and motivating feeling among other patients out there.
We plan to create and publish a book of individual patient stories from different countries around the world – together with you! We ask you to share your story with us - become part of “The Voices of Courage and Hope”. Find out more on our website! |
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INTERNATIONAL HARMONIZATION OF PRACTICES IN DESMOIDS
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In October 2017, the update of the position paper on the management of Sporadic Desmoid-type Fibromatosis has been published in “Annals of Oncology”. It is the result of a roundtable meeting of sarcoma experts from the European Organisation for Research and Treatment of Cancer (EORTC) Soft Tissue and Bone Sarcoma Group (STBSG) and patients/patient advocates from Sarcoma Patients EuroNet (SPAEN). The paper has been presented during the annual patient meeting of the Desmoid Tumour Research Foundation (DTRF) in September 2017 in Philadelphia, USA and during the annual conference of the “Connective Tissue Oncology Society” (CTOS) in November 2017 on Maui, Hawaii. Please find the full publication here.
During the CTOS conference, a plan was formed to work even more towards harmonization of practices not only in Europe, but also in Asia and America. A global event performed under the umbrella of EURACAN is planned for June 2018 and will host the leading experts in Desmoids worldwide. Responsible and driving this project are Bernd Kasper and Peter Hohenberger, Germany, Alessandro Gronchi and Silvia Stacchiotti, Italy, supported by patients and patient advocates of SPAEN and DTRF.
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Annual Meeting of CTOS, November 2017, Hawaii, USA
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The annual meeting of the “Connective Tissue Oncology Society” (CTOS) brings together healthcare professionals who specialize in sarcomas to discuss new developments, treatments, and advancements in the field. The 2017 conference was held in November in Maui, Hawaii. All presented abstracts can be found here. An interesting collection of articles featuring the most important news from the conference are provided by Healio – find out more here.
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ESMO Annual Meeting, September 2017, Spain: Video Summary
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One of the most important European meetings for healthcare professionals in oncology was held from September 8-12, 2017 in Madrid, Spain. Professor Sebastian Bauer, Germany, kindly provided a video summary of the most important findings of this conference.
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Rare cancers: the greatest inequality in cancer research and oncology treatment
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Collectively, rare cancers represent ∼22% of all cancer cases diagnosed in the EU and 27% of these in the USA. “However, the main expenditure in cancer research by leading research funding agencies […] is generally related to the single most prevalent forms, and does not include significant funding for rare cancer research”, say Muhammad A Alvi, Richard H Wilson and Manuel Salto-Tellez in the “British Journal of Cancer”. Read more.
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Improved survival using specialized multidisciplinary board in sarcoma patients
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What is the impact of a multidisciplinary tumor board (MDTB) presentation before treatment? This question is the topic of a study conducted in France and published in the “Annals of Oncology”. It’s no surprise and no spoiler: Compliance to clinical practice guidelines and relapse-free survival of sarcoma patients are significantly better! Read more. |
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New Horizons GISZ 2017
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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.
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“Harvesting Patient-generated information from internet discussion forums”, CTOS 2017
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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
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Webcast: Nutrition and Healthy Living with GIST
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Dr. Nikhil Guhagarkar, GIST patient from Mumbai and SPAEN Board Member, 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)
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Bone Cancer Awareness Week, October 8-15, 2017
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In October 2017, the Bone Cancer Research Trust launched 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. Read more here or on our website.
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The power of patient advocacy: Regorafenib in GIST
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The National Institute for Health and Care Excellence (NICE) in the UK approved Regorafenib for the 3rd line treatment for GIST Cancer. This means the drug is now available as a standard National Health Service (NHS) treatment to GIST patients in England, Scotland and Wales. Regorafenib is a potentially life-extending drug for GIST patients who relapsed after imatinib and a second-line TKI.
This decision was made thanks to the enormous efforts our member organization GIST Support UK took. Congratulations to all those involved!
More info on the GIST Support UK and the NICE websites.
Do you have a project or information you would like to share? Please contact us on info@sarcoma-patients.eu
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Ewing Sarcoma – Joining up the dots by Chris Copland
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Chris Copland of Unite2Cure met Dr. Jeff Toretsky who has managed to find a novel treatment option (currently in clinical trials) for Ewing sarcoma, a rare form of sarcomas starting in the bone. Read more about Jeff Toretsky’s stony way to get a drug for a rare disease such as Ewing into clinical trial phase on Chris’ blog.
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Osteosarcoma: The FACTOR conference by MIB Agents
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Once a year, the US-based patient advocacy group “MIB Agents” brings leading researchers, clinicians, surgeons, patient families and osteosarcoma patients and survivors together to discuss how to improve outcomes in osteosarcoma. The so-called FACTOR conference is the largest gathering of osteosarcoma patients in the world and will take place January 25-28, 2018 in Miami, USA. More info here or on the MIB Agents’ Facebook Page @MIBAgents.
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Rarer Cancer Patient Advocates Training Course, December 2017, Milan, Italy
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The Rarer Cancer Patient Advocates Training Course was held under the auspice of Rarer Cancers Europe by ESMO and ESO on 2nd to 4th December 2017 in Milan.
It took place alongside a Rarer Cancers Training course for oncology professionals and there were overlaps between the two events. Read more.
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EORTC Soft Tissue and Bone Sarcoma Group (STBSG) Meeting, October 2017, London, UK
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The STBSG meets twice a year, moving around Europe to enable easier access which allows junior researchers and doctors to get familiar with the sarcoma research agenda. The two day agenda brought delegates up to date with the current range of sarcoma clinical studies open for accrual of patients, and being actively planned. Read more.
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The 4th European Bone Sarcoma Networking meeting
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The European Bone Sarcoma Networking meeting brought together scientific and clinical researchers, as well as representatives from public and patient involvement (PPI) groups from 17 countries representing 5 networks across Europe to discuss the latest developments in bone sarcoma research. Read more.
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Italian Sarcoma Group XXI annual meeting
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This meeting, with the active participation of 151 members, resulted in one of the most successful meetings in the history of ISG. It was held in Naples May 23-25, 2017. Read more.
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“Ending the isolation: a guide to developing national rare cancers networks” by Cancer World
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Cancer World reports the latest about the European Reference Networks. Read more here.
Further information about the ERNs: http://euracan.ern-net.eu/
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New EMA location in Amsterdam, The Netherlands
After the Brexit decision, the European Medicines Agency (EMA) will need to relocate. Amsterdam in the Netherlands was chosen by the EU 27 Member States in November 2017. The Agency plans to take up its operations in Amsterdam on 30 March 2019 at the latest. More information here.
A digital platform to facilitate collaboration and efficiency in clinical trials
The European Medicines Agency (EMA) is about to launch one of the most innovative digital platforms that will facilitate collaboration, automate the clinical trial process, reduce inefficiencies and provide a more robust framework to support the application and execution of studies. Read more.
EMA Logo
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SPAEN conference 2018 & ESMO Sarcoma & GIST meeting
The SPAEN Annual Conference will take place on February 3-4, the ESMO Sarcoma & GIST meeting from February 5-8, 2018 in Milan, Italy. More information here.
EORTC Survivorship Summit
The 3rd EORTC Cancer Survivorship Summit takes place March 1-2, 2018 in Brussels, Belgium: http://events.eortc.org/wpmulti/survivorship/
EORTC Patients in Research conference 2018
This two-day course for cancer patient advocates takes place March 23, 2018 in Brussels, Belgium: http://events.eortc.org/wpmulti/patientdays/
EMSOS 2018
The annual meeting of the European Musculo-Skeletal Oncology Society E.M.S.O.S. will be held from 9 - 11 May 2018 in NH Krasnapolsky Hotel, Dam Square, Amsterdam: https://emsos2018.org/scientific-program/
ASCO 2018
The annual meeting of the American Society of Clinical Oncology 2018 will be held from June 5-8, 2018 in Chicago, USA: https://www.asco.org/2018-asco-annual-meeting |
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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 Registered Office:
Untergasse 36 * 61200 Wölfersheim/Germany
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