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Portrait of a Patient Advocate: Kai Pilgermann
Would you like to know more about what sarcoma advocates around the world are doing and working on?
We at Voices of Sarcoma want to introduce you to the advocates from our member groups.
Recently, we interviewed Kai Pilgermann from the German Sarcoma Foundation.
Read MoreSARCOMA CANCER IRELAND
Ireland: SARCOMA CANCER IRELAND Back to members Organisation Profile SARCOMA CANCER IRELAND is a non-profit, was set up in 2021 and is run by sarcoma patients, for sarcoma patients, across the island of Ireland. Our working committee and Board of Trustees consist of a mix of sarcoma patients and carers who are…
Read MoreIndia: Sachin Sarcoma Society
India: Sachin Sarcoma Society Back to members Organisation Profile Sachin Sarcoma Society is a patient support group that was formed in 2018 by a group of sarcoma survivors and caregivers. These individuals had all been misdiagnosed at other hospitals in Delhi before finding treatment with Dr. Sameer Rastogi at AIIMS Hospital in New Delhi.…
Read MoreImproving Communication between Patients and Oncologists, Part 2: Tips for Getting it Right
Focusing on the goals we share with our oncologist — treatment success and good quality of life — can help us to overcome communication challenges.
We can also adopt strategies for optimizing communication. These strategies involve a set of good habits and effective behaviors.
Here are eight tips for improving communication.
Read MoreRegister now: SPAGN Annual Conference & New Horizons GIST 2023
Register now! 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. Since 2010, SPAEN/SPAGN has organized the SPAEN/SPAGN Annual Conferences to bring sarcoma, GIST and desmoid…
Read MoreMantra-2: Milademetan in advanced/metastatic solid tumors incl. sarcomas
Agents: Milademetan Phase II Status Recruiting Sponsor Rain Oncology For further information please also consult ClinicalTrials.gov. This is a phase II basket study that evaluates the safety and efficacy of milademetan in patients with advanced or metastatic solid tumors with specific mutations (wild-type (WT) TP53 or MDM2) after standard-of-care therapy. WHO…
Read MoreImproving Communication between Patients and Oncologists, Part 1: Rethinking Our Roles
If you are a sarcoma patient, a physician, or a patient advocate, you know that medical encounters are sometimes frustrating and dissatisfying for those involved.
Communication can go wrong in many ways, both big and small.
This is particularly unfortunate when it happens in encounters between patients and oncologists, as there is so much at stake.
Read MoreTNG908 in MTAP-deleted solid tumors including soft tissue and bone sarcomas
Safety and tolerability of TNG908 in MTAP-deleted solid tumors including sarcomas Agents: TNG908 Phase I/II Status Closed for recruitment Sponsor Tango Therapeutics Further information on Clinicaltrials.gov. Phase I/II study in solid tumor patients with a specific genetic mutation, a MTAP deletion, including sarcomas (soft tissue and bone sarcomas) WHO is the trial for?…
Read MoreThe Value of Patient Involvement in Research
We hear a lot about patient involvement in research these days. It’s a hot topic. But what does it actually mean?
And more importantly, what benefits does it bring?
Read MoreLooking back on 2022 and ahead to 2023
How was 2022 for your organization? What accomplishments are you proud of?
We at SPAGN are looking back at what we have done in the past year to impact the treatment and survival of sarcoma patients. We also want to look ahead to our plans for the near future.
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