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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 MoreSPAEN Advocacy in Action Award 2018: The winners are… (2)
Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. The projects that were entered for the “Sarcoma Advocacy in Action Award 2018” once again showed this impressively! All entries were fantastic and the jury had a hard job to decide on…
Read MoreSPAEN Advocacy in Action Award 2021
SPAEN Advocacy in Action Award 2021 announced 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,…
Read MoreSPAGN Annual Conferences
SPAEN/SPAGN Annual Conferences Since 2010, SPAEN/SPAGN has been dedicated to organizing annual conferences that unite sarcoma, GIST, and desmoid patient groups with experts, researchers, and industry leaders. These in-person events have consistently brought together 80-100 participants from over 25 countries, including patient advocates, leading sarcoma experts, and pharmaceutical representatives. Each three-day conference focuses on learning…
Read More2021 SPAEN Virtual Conference: 22 – 24 April 2021
11th SPAEN Annual Conference Virtual, global, informative and collaborative The ongoing pandemic and the decision to hold the SPAEN 2021 Annual Conference as a virtual meeting has allowed us to have even more participants in 2021! Over 200 registered participants attended the SPAEN Conference 2021 with internationally leading sarcoma experts and patient advocates representing organizations…
Read MoreWelcome to Sarcoma Patients EuroNet
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Read MoreSoft Tissue Sarcoma
Adult soft tissue and visceral sarcomas tumours:(excluding gastrointestinal stromal tumour) are rareOnly 4–5 people out of 100 000 are diagnosed with STS per year in Europe. Overall, men have a slightly higher risk for STS than women and diagnosis occurs more frequently in patients >55 years, with the mean age at diagnosis being 59 years.…
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…
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