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Reflections for the New Year
2023 was a big year for SPAGN and the sarcoma patient community as a whole. We look back on the highlights of all that we achieved together and the many ways in which we grew, as we look to the year ahead.
Read MoreUSA: Rein in Sarcoma
USA: Rein in Sarcoma Back to members Organization profile: Rein in Sarcoma is a resource for patients and families touched by sarcomas. We are a nationally-known sarcoma foundation and provide support to patients and loved ones all across the world. Founded in Minnesota in 2001, we have funded over $2 million in innovative, collaborative…
Read MoreInsights from the EMA and EORTC Workshop on Developing Treatments for Ultra-Rare Sarcomas
Author: Gerry Feeney How can we develop new treatments in ultra-rare sarcomas, as a model for ultra-rare tumors? On January 12, 2024, a workshop between regulators, researchers and patient advocates was held at the European Medicines Agency (EMA) premises in Amsterdam. The objective for the workshop was to discuss strategies to be more flexible…
Read MoreSpain: ASARGA – Association of Sarcomas Assistance Groups
Spain: ASARGA – Association of Sarcomas Assistance Groups Back to members Organisation profile ASARGA, is a nonprofit association that brings together affected all types of sarcoma in Spain, giving support to both people suffering from this disease and their families. ASARGA works in coordination with other associations at a national level that, in one way…
Read MoreFIBROSARC: L19TNF+Doxorubicin vs Doxorubicin alone in advanced or metastatic soft tissue sarcoma
Agents: Onfekafusp alfa (L19TNF) + Doxorubicin vs. Doxorubicin alone Phase III Status Recruiting Sponsor Philogen S.p.A. For further information please also consult ClinicalTrials.gov. A Phase III Study Comparing the Efficacy of the Combination of Doxorubicin and the L19TNF to Doxorubicin Alone as First-line Therapy in Patients With Advanced or Metastatic Soft Tissue Sarcoma.…
Read MoreNetherlands: Patientenplatform Sarcomen
Netherlands: Patientenplatform Sarcomen Back to members Organisation Profile In 2003 a Dutch patient organisation was established for GIST patients. This group flourished and grew steadily, reaching over 450 members in 2016, including Dutch speaking patients in Belgium. In 2012 a patient organisation was created for all other sarcoma patients. This group faced severe challenges…
Read MoreMacedonia: GIST Patient Group Macedonia
Macedonia: GIST Patient Group Macedonia Back to members Contact Information GIST Patient Group Macedonia Key Contacts Dejan Krstevski 📧kkrstevski74@hotmail.com General Information Year of establishment: SPAGN member since: No. of members:
Read MoreKenya: Henzo Kenya
Kenya: Henzo Kenya Back to members Group Profile Henzo Kenya was an idea realised by three patients and two volunteers out of a need for emotional support in June 2007. In 2009 it was registered as a support group – community based organization with Ministry of Gender, Children and Social Development. Henzo membership consists of…
Read MoreItaly: Orchestra per la Vita Onlus
Italy: Orchestra per la Vita Onlus Back to members Organisation Profile Orchestra per la Vita Onlus has supported the Epithelioid Sarcoma research at the National Cancer Research center (IRCCS Istituto Nazionale dei Tumori ) in Milan during the last 5 years with a cumulative donation of more than 60.000 EUR. Here the major achievements: “Anthracycline,…
Read MoreItaly: A.I.G. Associazione Italiana GIST
Italy: A.I.G. Associazione Italiana GIST Back to members Organisation Profile A.I.G. Associazione Italiana GIST is a non-profit organization, founded in 2006, providing information, support and assistance to patients affected by GIST and to their families. It acts in cooperation with national and international patient organizations, medical community and pharmaceutical companie, with the support of Fondazione…
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