Blog & News
FDA Approves Groundbreaking Treatment for Rare Desmoid Tumors: Ogsiveo Offers New Hope
Today, the U.S. Food and Drug Administration (FDA) has approved Ogsiveo (nirogacestat) tablets as the first therapy designed for adults with progressing desmoid tumors, a rare subtype of soft tissue sarcomas. Desmoid tumors, though non-cancerous, are locally aggressive, causing pain and…
Sarcoma Intelligent Specialist Network and How We Got Here
One of the first things a newly diagnosed sarcoma patient is told when they contact a patient support group is that they must be treated by expert doctors in a specialist centre. But no one knows how to judge whether there are experts in a centre or not. SPAGN therefore set out a year ago to work towards a universally acceptable definition of an expert centre. Such a definition would allow new patients to get a quick understanding, advocacy groups to gain deeper knowledge of their country’s resources, and doctors in centres that are developing their expertise to have a clear understanding of what we as patients expect.
ESGO-EURACAN-GCIG Uterine sarcoma guidelines
In 2023, the European Society of Gynaecological Oncology (ESGO), the EURACAN, a European Reference Network for all rare adult solid cancers and the Gynecologic Cancer InterGroup (GCIG) have agreed to start a new joint project with the goal of developing guidelines…
CTOS 2023 Highlights: Patient Advocacy Lounge Leaves a Lasting Impression
The Connective Tissue Oncology Society held its annual conference in Dublin, Ireland from November 1-4, 2023. The conference, an opportunity for the global sarcoma community to come together, has left a lasting impression: The role of patient advocates in this community is growing and SPAGN’s Patient Advocacy Lounge was a huge success.
Patient Advocates Meet the World’s Sarcoma Specialists in November
The oncology community is preparing to gather for the annual conference of the Connective Tissue Oncology Society (CTOS) in Dublin from November 1-4. This pivotal event brings together oncologists, researchers, and patient advocates dedicated to the common goal of advancing the understanding and treatment of these rare cancers. We take a closer look at the importance of the CTOS-SPAGN partnership and its global impact going forward.
Italy: MC4 in corsa per la vita!
Italy: MC4 in corsa per la vita! Back to members Organisation Profile Our Mission: Base our direct experience, conventional medicine still cannot offer specific and effective treatments for rare cancer like EpS; once thesurgery, chemo and radio therapies have failed, there…
WECAN Academy 2023: Empowering Cancer Patient Advocates in Europe
WECAN –Â The Workgroup of European Cancer Patient Advocacy Networks was established in 2015 when 15 umbrella cancer patient advocacy organizations came together to initiate the informal network. WECAN was born out of the true need for the cancer patient community to…
Understanding Mental Health in Rare Soft-Tissue Tumor Patients: Take the Survey and Share Your Insights
Mental health in patients with rare soft-tissue tumors What is this online survey about? The purpose of this survey is to learn about the experiences and challenges of individuals with soft-tissue tumors. In doing so, we focus on a variety of…
USA: Sarcoma Strong
Contact Information Sarcoma Strong1367 Washington Ave, Suite 209Albany NY 12206USAPhone: 5183786499Telefax: 5187012912Email: sarcomastrong@gmail.comWeb: https://sarcomastrong.com Contact Person Dr. Matthew R. DiCaprioFounder of Sarcoma Strong / Orthopedic OncologistPhone: 5183786499E-Mail: sarcomastrong@gmail.com Mrs. Blair DiCaprioDirector of public Relations and Marketing Organisation Profile
Join our next Knowledge Spot Webinar – November 21st, 2023
Open clinical studies in soft tissue sarcomas, GIST and bone sarcomas Speakers: Nathalie Gaspar, France & Robin Jones, UK For rare cancers as sarcomas, clinical trials are an important part of the treatment concept, as standard therapies are often limited. They might be…