Uncategorized-EN
ROGER EXPLORES… Whole Genome Sequencing: Hopes are high, but limitations (still) a reality
Roger Wilson is an eminent figure in the national and international sarcoma patient advocacy world. Diagnosed in 1999 with a soft tissue sarcoma followed by multiple relapses and operations, Roger is recognized for his knowledge in sarcoma matters. He founded Sarcoma UK, has published many articles, shaped patient-led research and advocacy work, and he is the mastermind behind the concept of Sarcoma Intelligent Specialist Networks (SISN). Roger will share with us from time to time his insights and opinions on sarcoma matters in ROGER EXPLORES… He starts off by examining what’s happening with whole genome sequencing and why it is not the answer to everything, yet! A must read!
Read MoreAn award-winning ‘Manifesto against Sarcomas’: ASARGA campaigns against inequality in sarcoma care in Spain
The winner of this year’s Advocacy in Action Award, ASARGA, is fighting for more equitable access to early diagnosis and better care throughout the country in Spain. The Sarcoma Patient Advocacy Care Group mobilized 3000 supporters for their advocacy initiative to lobby policy makers. Natalia Fernández tells us the story of ASARGA and their efforts to include sarcoma care in Spain’s National Health System Cancer strategy.
Read MoreUSA: Pittsburgh Cure Sarcoma
USA: Pittsburgh Cure Sarcoma Back to members Organisation Profile Our Mission: Raise awareness of childhood and adult sarcoma and fund research in the Pittsburgh region and beyond. In January 2011, Drs. Hussein Tawbi and Kurt Weiss, with the UPMC Hillman Cancer Center, along with a start-up committee of 12 members, joined with the Sarcoma…
Read MoreUSA: Liposarcoma Support Network
USA: Liposarcoma Support Network Back to members Organisation Profile The Liposarcoma Support Network (LSN) – Program by the Life Raft Group The Liposarcoma Support Network (LSN) is committed to enhancing the survival and quality of life for people living with liposarcoma through patient-powered research, education and empowerment, and global advocacy efforts. Our vision is…
Read MoreFOG-001 in Locally Advanced or Metastatic Solid Tumors
Agents: FOG-001 Phase I/II Status Recruiting Sponsor Parabilis Medicines, Inc. For further information please also consult https://clinicaltrials.gov/study/NCT05919264 This phase 1/2 (first in human), open-label, non-randomized, dose escalation and dose expansion study evaluates the safety, tolerability, PK, pharmacodynamics, and antitumor activity of FOG-001 in patients with advanced or metastatic solid tumors likely or known to have…
Read MoreADCElerate1
First-in-Human Study of ADCE-D01 in Soft Tissue Sarcoma (ADCElerate1) Agents: ADCE-D01 Phase I/II Status Recruiting Sponsor Adcendo ApS For further information please also consult https://www.clinicaltrials.gov/study/NCT06797999 ADCElerate1 is a first-in-human, phase 1/2, open-label, dose escalation and expansion study to evaluate the safety, pharmacokinetics, and antitumor activity of ADCE-D01 in patients with metastatic and/or unresectable soft tissue sarcoma. ADCE-D01…
Read MoreiEuroEwing
iEuroEwing is a Phase III international clinical trial to optimize treatment for Ewing sarcoma patients. Agents: Systemic and local therapies Phase III Status Recruiting Sponsor Co-funding of national funding bodies Further information can be found here. WHO is the trial for? The trial is open for patients diagnosed with Ewing sarcoma or Ewing-like…
Read MoreBoard Elections 2025
SPAGN Board Elections: With gratitude and excitement for what’s ahead We are delighted to announce the re-election of Vandana Gupta and Sorrel Bickley to the SPAGN Board for another four-year term. Their continued commitment, expertise, and leadership are invaluable to our work in strengthening the global sarcoma patient advocacy community. We also warmly congratulate Denise…
Read MoreUSA: Sarcoma Alliance
USA: Sarcoma Alliance Back to members Organisation Profile The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support. Suzanne Leider founded the Sarcoma Alliance in 1999 in the living room of her home with the mantra “guidance, education, and support” in…
Read MoreUSA: Sarcoma Coalition
USA: Sarcoma Coalition Back to members Organisation Profile The Sarcoma Coalition is comprised of Patient Advocacy organizations and foundations that represent a cross-section of sarcoma subtypes or a pan-sarcoma group. There is no individual membership. The membership of the Coalition has a designated representative to participate in the Roundtable meetings of the Sarcoma Coalition…
Read More