Global Collaboration: Why It Matters for Neuroblastoma Families

September is Childhood Cancer Awareness Month — a reminder that every child’s fight deserves global urgency. This year, Shir for Life marked the month in two important ways: hosting our September 5th webinar with Dr. Lucas Moreno, President of SIOPEN, and later joining the international neuroblastoma community at the SIOPEN annual conference in Copenhagen.

The September Webinar: Collaboration with Urgency

At our September webinar, Dr. Moreno outlined the current landscape of neuroblastoma research. He highlighted both progress and remaining challenges:

“There are still many children that develop relapse and have poor outcomes, and that is unacceptable today. It’s not okay to say that it will be fixed in some years. There is a sense of urgency.”

SIOPEN today includes more than 600 members across 27 countries, working to accelerate clinical trials and share data in real time. Dr. Moreno explained that international collaboration is the only way to move faster and ensure that promising therapies reach children worldwide.

Examples of Collaborative Trials

Several studies demonstrate how this collaborative model is reshaping research:

• BEACON2 trial — A “platform” study for relapsed neuroblastoma, designed to add new drug combinations over time.

• MONALISA trial — The first clinical trial testing liquid biopsies in a childhood cancer, to see if they can guide real treatment decisions.

• Frontline innovation — New approaches testing chemoimmunotherapy, antibodies earlier in treatment, and incorporation of agents like DFMO and ALK inhibitors into large-scale trials.

What Families Are Asking

Parents raised urgent questions during the Q&A:

• What are the best treatments for late relapse?

• Are liquid biopsies available outside of clinical trials?

• Why do U.S. and European approaches differ, for example with tandem transplant?

• How can families access DFMO in countries where it isn’t approved?

Dr. Moreno acknowledged these challenges and pointed again to collaboration as the way to close gaps between countries, trials, and access.

SIOPEN in Copenhagen: Families at the Table

Later in September, Shir for Life’s founder Einat Dado Baralia attended the SIOPEN annual general meeting in Copenhagen. There, she strengthened partnerships, built new connections, and represented families alongside leading doctors and researchers.

Shir for Life — and International Neuroblastoma Day — were recognized from the stage, underscoring that advocacy is not just an add-on to research but a critical part of driving progress.

Forward, Together.

As Childhood Cancer Awareness Month comes to a close, Shir for Life’s work continues. From expert-led webinars to international collaboration, one message is clear: families and researchers must move forward together if we are to change outcomes. Together, we can move research forward.

>> 👉 Watch the full webinar with Dr. Lucas Moreno >> Register to join the next session in the Neuroblastoma Webinar Series