Blog & News

Join the SPAGN Editorial Blog Team: Volunteer Job Opportunity

Apr 16, 2024 |

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…

My lumpy life as a young adult

Mar 29, 2024 |

“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!

Mar 7, 2024 |

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!

Mar 7, 2024 |

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!

Mar 6, 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…

EU-X-CT – Patient Questionnaire – Borders should not be barriers to clinical trials

Feb 21, 2024 |

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…

Should I join a clinical trial?

Feb 20, 2024 |

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!

Feb 3, 2024 |

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

Jan 25, 2024 |

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

Jan 23, 2024 |

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.…