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Érintettek Association
Hungary: Érintettek Association Back to members Organisation Profile Érintettek Association is a non-profit parents’ association, that primarily wants to provide help to children with cancer, leukemia and those who have recovered and their families. The founders of the association, are all involved, as parents they are raising a child with cancer or a child who has…
Read MoreOur latest SPAGN Newsletter is out!
The sarcoma community is active – there’s lots for you to check out, to join and make your voice heard as well. Read all updates in in the sarcoma world and SPAGN in our latest newsletter (April 2023) here. Learn more about our survey about “Priorities in Sarcoma Resarch”, our new team member Cory,…
Read MoreHow the Pandemic Produced a Sustainable Resource for Sarcoma Patients in India
Sachin Sarcoma Society, a SPAGN Member Group based in India, shares a guest blog about building support networks and overcoming the challenges of the COVID-19 pandemic.
Read MoreYour priorities in sarcoma research – make your voice heard!
The need for patient involvement in scientific research is curcial as there is a mismatch between what patients, clinicians, and researchers would want to see researched, and what is actually being researched. It is our aim to bridge this mismatch and open up the discussion between patients and clinicians to agree on priorities for future research. Through our Patient-Powered…
Read MorePortrait 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…
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