Posts by cowic
Patient led PROMs must take centre stage in cancer research
by Roger Wilson, co-founder and honorary president of SPAEN and founder of Sarcoma UKResearch Involvement and Engagement, February 2018 Patient involvement in research is about adding value rather than commenting on technical quality. After 15 yearsas an involved patient in cancer research I started looking around and I found I was asking myself, where…
Read More7th SPAEN Annual Conference, September 8-10, 2016 in Warsaw, Poland
Learning, teaching, sharing and a great sense of community Once again, the community of patient advocates for sarcomas, GIST and desmoids have come together for another successful SPAEN Annual Conference from September 8-10, 2016. This year, Poland was the host country, welcoming all participants with great hospitality and warmth to its capital Warsaw. Read here…
Read More2018 SPAEN Annual Conference: 3-4 February 2018, Milan/Italy
SPAEN Annual Conference combined with ESMO GIST/Sarcoma expert meeting in 2018 SPAEN is very excited that for the first time, the SPAEN Annual Conference 2018 will be held combined with a professional meeting. SPAEN and European Society of Medical Oncology (ESMO) have agreed to combine their meetings and hold the SPAEN conference just before the…
Read MoreSPAEN Advocacy in Action Award 2017: And the award goes to…
Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We decided that it is time to shout out about how important patient advocacy in sarcomas is – for patients, caregivers, healthcare professionals or anyone interested in sarcomas. We are very…
Read MoreCall to action: SPAEN Advocacy in Action Award 2019
SPAEN Advocacy in Action Award for best projects in sarcoma patients advocacy 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 – for patients, caregivers, healthcare…
Read MoreStatutes
Blindtext Ich bin Blindtext. Von Geburt an. Ein trauriges Leben ist das. Ich kenne weder Erzeuger noch Autor. Irgendwann haben sie mich in die Welt gesetzt, und seitdem werde ich herum gereicht. Meine Eltern bekennen sich nicht einmal zu mir. Ich stehe ganz allein da. Meistens zwischen schillernden neuen Layouts, die dann alle bewundern. Oder…
Read MoreSpain: FUNDACIÓN MARI PAZ JIMENEZ CASADO
Contact Information FUNDACIÓN MARI PAZ JIMENEZ CASADOPlaza Valparaiso, nº 4 Escalera Derecha – 5º G 28016 Madrid Email: info@fundacionmaripazjimenez.orgWeb: http://www.fundacionmaripazjimenez.org/ Contact Person Alberto Martinez Gutierrez (Patron and Treasurer)Email: almartinez@fundacionmaripazjimenez.org Organisation profile The FUNDACIÓN MARI PAZ JIMÉNEZ CASADO (FMPJC) is an independent, non-profit organization with financial and functional autonomy, and whose scope of action is the…
Read MoreSpain: ASARGA – Associacion Sarcomas of Galicia
Contact Information ASARGA – Associacion Sarcomas of Galicia Email: secretaria@asarga.es Web: https://www.asarga.es/ Tel.: +34900801117 Organisation profile A non-profit association that brings together those affected with any type of Sarcoma in Galicia and throughout Spain. We provide support to the people who suffer from it and their families. Asarga has the following general services: Management of…
Read MoreUK: Bone Cancer Research Trust
Contact Information Bone Cancer Research Trust 10 Feast Field Horsforth Leeds LS18 4TJ UK Tel. +44 (0) 113 258 5934 Email: info@bcrt.org.uk Web: https://www.bcrt.org.uk/ Facebook: BoneCancerResearchTrust Twitter: @BCRT Instagram: @bonecancerresearch Organisation Profile Our Vision: A world where primary bone cancer is cured. Our Mission: To save lives and improve outcomes for people affected by…
Read MoreFrance: SOS Desmoide France
Contact Information SOS Desmoide France 45, rue René La Combe, 49 100 Angers, FranceWeb: www.sos-desmoide.asso.frEmail : association.sos-desmoide@laposte.net Contact Person Karine le Bobinnec (President) Organisation Profile Its aim: like most PAGs, it is to develop the awareness of this disease, stimulate research, inform & support patients. It started in 1998. The core of our organisation…
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