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Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS) Back to members Organisation profile AEAS, the Sarcoma Patients Spanish Association, is a non profit organization that advocates on behalf of people affected by sarcoma. It was set up in 2008, in Madrid, by a group of sarcoma patients and their relatives, aiming to…
Read MoreSouth America: Alianza GIST
South America: Alianza GIST Back to members Organisation Profile Alianza GIST is an alliance of Spanish speaking GIST patient advocacy groups and patients advocates from Argentina, Brazil, Bolivia, Chile, Colombia, Peru, Venezuela, Costa Rica, Nicaragua, Guatemala, El Salvador, Dominican Republic, Mexico and Spain. Its main objectives are: Educate and inform patients as well as the…
Read MoreNorway: Sarkomer Norway
Norway: Sarkomer Norway Back to members Organisation Profile Sarkomer was founded on the 1st of October 2011 and is a nationwide patient organisation and a support group for everyone affected by sarcoma. We offer support, information and activities for patients, relatives and survivors. Our mission is to contribute to more awareness and knowledge about sarcoma.…
Read MoreSomos raros, mas juntos somos mas fortes!
Juntas, duas pacientes brasileiras com tumor desmoide, Carolina Menezes e Georgia Garofalo, fundaram a Desmoide Brasil em 2021. Desde então, a Desmoide Brasil tem – entre outras iniciativas — organizado simpósios, montado exposições, lançado um registro de pacientes, escrito um livreto de boas-vindas para novos pacientes, e estabelecido uma comunidade online ativa no Facebook e WhatsApp. Sua história é uma inspiração!
Read MoreWe are rare, but together we are stronger!
Together, two Brazilian desmoid tumor patients, Carolina Menezes and Georgia Garofalo, founded Desmoide Brasil in 2021. In the years since then, Desmoide Brasil has – among other things — hosted symposia, organized an exhibition, launched a patient registry, penned a welcoming booklet for new patients, and established a thriving online community on Facebook and WhatsApp. Their story is an inspiration!
Read MoreFirst Webinar “What is a Sarcoma?” in Spanish and Portuguese, March 22, 2024!
Nos complace anunciar nuestro primer webinar para pacientes con sarcoma, cuidadores y defensores de pacientes de América Central y del Sur, realizado en español y portugués por especialistas en sarcoma de Argentina y Brasil en esta ocasión. El webinar tendrá lugar el 22 de marzo de 2024, sobre el tema “¿Qué es un sarcoma?”. Los…
Read MoreEU-X-CT – Patient Questionnaire – Borders should not be barriers to clinical trials
The EU-X-CT initiative aims at revolutionizing patient access to clinical trials across borders. But before we delve into the project details, we want to emphasize something crucial – your participation! The data is being collected through a Patient Questionnaire which is available in multiple languages. Your insights are invaluable in understanding the current landscape of…
Read MoreShould I join a clinical trial?
When you have been diagnosed with sarcoma you are faced with making important, and at times daunting decisions about treatment. Amongst the treatment choices, a clinical trial may be an option. But how do you know if it is a good option for you? Is it something you should even consider? Denise Reinke asks 6 key questions about clinical trials and provides helpful answers for sarcoma patients to consider.
Read MoreINSIGHT: Ripretinib vs Sunitinib in advanced GIST with specific KIT Exon mutations
Trial name: INSIGHT Agents: Ripretinib vs. Sunitinib Phase III Status Recruiting Sponsor Deciphera Pharmaceuticals This is a Phase 3 study comparing the efficacy of ripretinib to sunitinib in participants with GIST who progressed on first-line treatment with imatinib, harbor co-occurring KIT exons 11+17/18 mutations, and are without KIT exon 9, 13, or 14…
Read MoreNo Losers Here!
War metaphors are used all the time in the context of cancer. “You’re a fighter! You got this!”, people say to a newly diagnosed patient.
And the war metaphors seem to imply that if someone succumbs to cancer, it’s because they didn’t fight hard enough, or worse, gave up – “He lost his battle against cancer.” Many point out that such expectations are an additional burden placed upon a person who is already undergoing so much. But I wonder: Can the use of war metaphors be of help to us sarcoma patients as we strive to take an active role in our treatment?