Join the SPAGN Editorial Blog Team: Volunteer Job Opportunity
VOLUNTEER JOB POSTING: Editors for the SPAGN Blog? Voices of Sarcoma? We are looking for volunteers to serve on the Editorial team of SPAGN?s blog ?Voices of Sarcoma?. Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national sarcoma patient advocacy organizations. Uniting more than 65 member groups from five continents, SPAGN is the voice for sarcoma patients around the globe. SPAGN is working to improve the treatment and care of sarcoma patients through information and advocacy, supporting its national members by increasing the visibility of sarcoma with policymakers and the public. The Blog covers topics of interest to the wider SPAGN community, with the aim of…
?????My lumpy life as a young adult
?After a shower, I noticed an odd lump on my left hip. Two weeks passed, but Lumpy?the name I declared this mysterious lump?remained. Luckily, I had a when in doubt, check it out mentality?? Read about Matt?s sarcoma journey and find out why sarcoma is like skydiving.
?????Somos 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!
?????We 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!
?????First 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 sarcomas son un grupo de cánceres raros del tejido conectivo o del hueso. Reserve la fecha: 22 de marzo de 2024 Hora: 19:00 hora local (Brasil, Argentina, Paraguay) Enlace de inscripción: Regístrese aquí Regístrese aquí Oradores: ?? Dr. Matías Chacón, Instituto Alexander Fleming de Buenos Aires, Argentina (Habla en español) ?? Dr. Fernando Augusto…
?????EU-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 cross-border clinical trial access. So, seize this opportunity to make your voice heard by completing the Patient Questionnaire. Remember, the deadline for submissions is March 5, 2024. Take the Patient Questionnaire About the EU-X-CT Initiative Led by a diverse coalition of stakeholders, EU-X-CT seeks to simplify the process of accessing clinical trials by gathering important…
?????Should 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.
?????No 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?
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.
?????Insights 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 in developing and approving new drug treatments for rare cancers, including Sarcoma, which can provide an initial use-case to define paradigms for treatment of other rare cancers. Delegates from regulators from the EMA, ANSM (French National Agency for Medicines and Health Products Safety) and FDA (US Federal Drug Agency) participated in the workshop, together with…
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