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Research

We want these funds to help advance the research in to rhabdomyosarcoma in order to find better treatments to lengthen and improve the quality of life of these children and their families. Additionally, we want more effective treatments to be available at the point of relapse. Ultimately, we would like to see treatments in place that can cure rhabdomyosarcoma safely.

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Our Approach

Advancing clinical research and making the discoveries necessary to fight and overcome rhabdomyosarcoma effectively, and with minimal long term side effects, is critical to our strategy.

Ensuring that the research has concrete outputs that can be translated to provide the greatest benefit to patients diagnosed around the world in the future is also vital.

We work closely with a network of expert scientists and clinicians who focus on rhabdomyosarcoma. These individuals are based at major research institutions and leading paediatric cancer hospitals. They include, the Institute of Cancer Research (ICR), the University of Birmingham, Wellcome Sanger Institute, The Royal Marsden, Great Ormond Street Hospital and the UCL Great Ormond Street Institute of Child Health.

Advancing clinical research and making the discoveries necessary to fight and overcome rhabdomyosarcoma effectively, and with minimal long term side effects, is critical to our strategy.

Ensuring that the research has concrete outputs that can be translated to provide the greatest benefit to patients diagnosed around the world in the future is also vital.

We work closely with a network of expert scientists and clinicians who focus on rhabdomyosarcoma. These individuals are based at major research institutions and leading paediatric cancer hospitals. They include, the Institute of Cancer Research (ICR), the University of Birmingham, Wellcome Sanger Institute, The Royal Marsden, Great Ormond Street Hospital and the UCL Great Ormond Street Institute of Child Health.

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Susanne Gatz

Our Research Priorities

Alice’s Arc will invest in research that will

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Alice’s Arc will invest in research that will

Scientific Advisory Team

Alice’s Arc has created a Scientific Advisory Team to help inform, deliver and review our research strategy. The team provides expert guidance primarily on the following:

This team of professionals comprises scientists and clinicians from the rhabdomyosarcoma community as well as medical professionals across other specialisms.

Living REFoRMS updates

We are pleased to share the findings of the regular reviews of studies into new treatments (early phase studies) in relapsed and refractory rhabdomyosarcoma that the University of York are conducting. These reports are prepared every six months and can be accessed here. If you wish to discuss these, please contact us.

The first Living REFoRMS update was performed in October 2022.

The second Living REFoRMS update was performed in April 2023.

The third Living REFoRMS update was performed in November 2023.

The fourth Living REFoRMS update was performed in May 2024.

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