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Spain: Sarcoma Patients Spanish Association/Asociación Española de Afectados por Sarcoma (AEAS)
Asociación Española de Afectados por Sarcoma (AEAS) Contact Information Email: secretaria@aeasarcomas.org Phone: 0034681301754 Web: https://www.aeasarcomas.eu/ Contact Persons Presidente: Jose Luis Muñoz Vicepresidente: Dr. Antonio Casado Secretario: Orlando Dámaso Organisation profile AEAS, the Sarcoma Patients Spanish Association, is a non profit organization that advocates on behalf of people affected by sarcoma.…
Read MoreIDRX-42 in metastatic and/or unresectable GIST
Trial name: IDRX in advanced GIST Agents: IDRX-42 Phase I/Ib Status Recruiting Sponsor IDRx Inc. This is a Phase 1/1b open-label study of IDRX-42 in metastatic and/or unresectable GIST. Further information can be found on clinicaltrials.gov. WHO is the trial for? Adult patients with confirmed diagnosis of unresectable or metastatic GIST Patients…
Read MoreSunriseLMS: Unesbulin in Advanced Leiomyosarcoma
Agents: Unesbulin vs. Placebo Phase II/III Status Recruiting Sponsor PTC Therapeutics For further information please also consult ClinicalTrials.gov. This study compares the efficacy and safety of unesbulin plus dacarbazine versus placebo plus dacarbazine in advanced LMS who have received at least 1 prior line of systemic therapy. WHO is the trial for?…
Read MoreBrightline-1: Advanced Dedifferentiated Liposarcoma
Treatment of BI 907828 Versus Doxorubicin in Patient With Advanced Dedifferentiated Liposarcoma (Brightline-1) Agents: BI 907828 vs. Doxorubicin Phase II/III Status Closed for recruitment, trial still ongoing (active) Sponsor Boehringer Ingelheim For further information please also consult ClinicalTrials.gov. This is a Phase II/III registration study evaluating the safety and efficacy of BI 907828…
Read MoreGlobal TGCT consensus paper published
The SPAGN expert-patient global consensus paper on the management of TGCT (Tenosynovial Giant Cell Tumor) has been published in “Cancer Treatment Reviews”. Over 50 experts and patient advocates have worked together over months to formalize guidelines based on the available evidence and experience within the expert community. We are happy and proud to bring…
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SPAGN Annual Conference & New Horizons GIST 2023:
Hand in Hand for the first time
Save the Date! 2023 SPAGN Annual Conference May 11-13, 2023 in Dublin/Ireland NEW HORIZONS GIST May 13-15, 2023 in Dublin/Ireland For the first time ever, the SPAGN Annual Conference and the New Horizons GIST Meeting will be held hand in hand. About the SPAGN Annual Conference: Since 2010, SPAEN/SPAGN has organized annual conferences to…
Read MoreHow 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…
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