Uncategorized-EN
How to Create High-quality Information Materials for Patients, Part 1: Checklist of Key Steps
As any advocate knows, an important task of a patient organization is to produce information materials for patients and their caregivers. This task is not as easy as it looks — after all, most of us advocates have not been trained in journalism or graphic arts or medicine.
We may wonder: What makes a brochure or a website text for patients successful? How can our patient advocacy organization ensure the quality of the patient resources we produce?
Read MoreAdvocacy 2.0: The Evolving Role of Advocates in Rare Cancers
What do you say when someone asks you what a patient advocate does?
If you asked me, I would answer from my own experience: Advocates work with patients and their families. We support people and we share information with them.
However, as important as these activities may be, there is so much more that we advocates can do.
Read MoreEditorial Guidelines for SPAGN Blog
1. The Blog’s Mission / Slogan The purpose of the SPAGN Blog is to cover topics of interest to the wider SPAGN community, with the aim of conveying information, sharing experiences and viewpoints, and strengthening the bonds of the SPAGN community. Slogans: “Strengthening the international sarcoma community by sharing knowledge and experience” and “Building a…
Read MoreCommenting Policy
We encourage you to share your thoughts as they relate to topics being discussed in the Voices of Sarcoma blog. We review and post comments according to the policy below. We reserve the right to not post comments or to remove comments that are inconsistent with our policy. Comments that include the following will not…
Read Moreneuer post später page
Irgendwelche hübschen Sachen Irgendwelche hübschen Sachen Irgendwelche hübschen Sachen Irgendwelche hübschen Sachen Irgendwelche hübschen Sachen Irgendwelche hübschen Sachen Irgendwelche hübschen Sachen Cancers
Read MoreAIAA Winners 2021
Advocacy in Action Award 2021 Winners announced Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We believe it is time to shout out about how important patient advocacy in sarcomas is – for patients, caregivers, healthcare professionals or anyone interested in…
Read More100 years Ewing Sarcomas: Learnings from the past, challenges for the future
Over the course of the two-day conference, we took a look on what has been achieved in Ewing Sarcoma so far, what the Status Quo of Ewing management currently is and where the future might take us. Over 300 experts from all over the world joined the meeting! The meeting was held to honor the…
Read MoreTreament News in GIST: EU – Approval for Ripretinib in forth-line
Good news for GIST patients in the EU: In November 2021, the EMA has granted marketing approval for ripretinib (Qinlock®) for patients with advanced gastrointestinal stromal tumours (GIST) who already received three or more kinase inhibitors prior. Read EMA’s press release here: https://www.ema.europa.eu/en/medicines/human/summaries-opinion/qinlock
Read MoreNew Study on Preoperative Radiotherapy in Extremity Sarcomas
Currently, soft tissue sarcomas (STS) are preoperatively irradiated in a conventionally fractionated regimen of 25 x 2 Gy in five weeks. Recent radiobiological investigations, however, have revealed a rationale for sensitivity to (modest) hypofractionation. The so called “SCOPES” study (Short Course Of Preoperative radiotherapy in Extremity Sarcomas) will investigate, in a prospective randomized trial, a…
Read MoreUnmet Medical Needs and Future Perspectives for Leiomyosarcoma Patients
As leiomyosarcoma patients are challenged by the development of metastatic disease, effective systemic therapies are the cornerstone of outcome. However, the overall activity of the currently available conventional systemic treatments and the prognosis of patients with advanced or metastatic disease are still poor, making the treatment of this patient group challenging. Therefore, in a joint…
Read More