SPAGN – Joining Sarcoma Patients Globally


Sarcomas are some of the ‘core’ cancers associated with Li Fraumeni Syndrome (LFS) – including soft tissue sarcomas like rhabdomyosarcoma in children or leiomyosarcoma in adults, and bone sarcomas such as osteosarcoma. While rare in the general population, sadly these are all too common in LFS families. In general these are cancers which for which there are no new treatments, and because they are rare they’ve not seen the advances that other more common cancers have seen in recent years. And while there are over 150 different sarcomas, what they have in common is a complicated biology and patients often struggle to get diagnosed and there’s a relatively high rate of initial misdiagnosis. The Sarcoma Patient Advocacy Global Network (SPAGN – pronounced SPAN, with a silent G), is a truly international network of over 60 groups of patients worldwide. It exists to bring patients together to work for the common good – to raise awareness of these cancers, to collaborate with doctors and researchers looking to improve treatments, and to share information and pool resources to get the best for patients.

We are happy to report that the George Pantziarka TP53 Trust has recently joined SPAGN. Most of the groups that make up SPAGN represent either specific sarcoma sub-types or classes of sarcoma (like bone sarcomas). However, to date there has been nobody in SPAGN specifically looking at predisposition to sarcomas, of which LFS is the most well-known. We are happy to work with sarcoma groups across the world, both to raise awareness of sarcomas and also to make the point that the research and treatment agenda should take account of those people who are born with a predisposition to developing sarcomas. We really look forward to making a difference and working with this sarcoma patients and advocates across the world.

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