The SPAGN Blog
Sarcoma Intelligent Specialist Network and How We Got Here
by Roger Wilson, Honorary President of SPAGN. "You must be treated by specialists at an expert centre!" One of the first things a newly diagnosed sarcoma patient is told when they contact a patient support group is that they must...
CTOS 2023 Highlights: Patient Advocacy Lounge Leaves a Lasting Impression
by Amy Bruno-Lindner, SPAGN Volunteer and Editor-in-Chief of Voices of Sarcoma. 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...
Patient Advocates Meet the World’s Sarcoma Specialists in November
by Amy Bruno-Lindner, SPAGN Volunteer and Editor-in-Chief of Voices of Sarcoma. As the oncology community prepares to gather for the annual conference of the Connective Tissue Oncology Society (CTOS) in Dublin from November 1-4, the spotlight falls on sarcomas. The...
How to Successfully Engage Policymakers for Sarcoma Patients
An Interview with Richard Davidson, Sarcoma UK Chief Executive Interview by Gabi Ott, SPAGN Volunteer Richard Davidson, Chief Executive of Sarcoma UK, is passionate about changes that patients can make at the policy level....
I Lost My Son and Found My Purpose
Lidiya Vitanova, Founder of Together Fighting Sarcoma A sarcoma group in Bulgaria working to bring about change By Lidiya Vitanova, Founder of Together Fighting Sarcoma, with Amy Bruno-Lindner, Editor of Voices of Sarcoma Lidiya...
Check It Out!
Finding a lump -- again By Roger Wilson, Honorary President of SPAGN I found a strange lump a few weeks ago. My mind went racing. I have found lumps before, and they have proved to be malignant -- not...
When the Patient Becomes the Researcher
Advocacy as a driving force for medical advancement By DR. SYDNEY STERN, Biomedical Scientist and Patient Advocate. An underdog disease Much of my life was filled with mobility difficulties that were dismissed by my doctors as part of growing...
Facilitating Collaboration in Sarcoma Care
Prof. Dr. Bernd Kasper, SPAGN Board Member A Conversation with Dr. Bernd Kasper By Cory Archibald, Communications Director for SPAGN Meet Professor Dr. Bernd Kasper: medical oncologist at the Mannheim Cancer Center (MCC) at the...
5 Questions Every Patient Should Ask When Searching for Information about Sarcoma
Empowering Patients through Health Literacy By Amy Bruno-Lindner, SPAGN Volunteer and Editor-in-Chief of the Voices of Sarcoma blog Getting a sarcoma diagnosis is a life-altering event that brings a wave of emotions and questions. Once the initial shock...
What Makes Sarcoma so Challenging?
Seven Challenges and Five Goals for Overcoming Them By KATHRIN SCHUSTER, Executive Director of SPAGN July is Sarcoma Awareness Month. The aim is to promote an understanding of sarcoma, a rare form of cancer that originates in the...
Three Patient Advocacy Award Winners and One Sponsor
Three extraordinary winners were announced at the SPAGN annual conference in Dublin, May 2023. Photo by Uli Deck, Artis Photography Making a difference - the people behind the awards BY GABI OTT, SPAGN Volunteer, Editor in the Voices of...
How the Pandemic Produced a Sustainable Resource for Sarcoma Patients in India
Yellow ribbons are a sign of the Sachin Sarcoma Society's aim to spread sarcoma awareness among patients and to build companionship. Here, survivors and patients who volunteer to distribute biscuits and juice to other patients, talk with them and boost...
Would you like to submit a text to Voices of Sarcoma?
The blog Voices of Sarcoma covers topics of interest to the wider SPAGN community, which includes patient advocates of our Member Groups, sarcoma patients and caregivers, as well as members of the medical profession. The aim of the blog is to convey information, share experiences and viewpoints, and strengthen the bonds of the international sarcoma community. While Voices of Sarcoma welcomes submissions on a wide range of topics, we ask that you adhere to our Editorial Guidelines. Find out more.
Subscribe to our SPAGN Blog
