USA NF Conference
Every year scientists, doctors and health care professionals from many countries come together to share the latest discoveries about neurofibromatosis (NF) and discuss new ways to develop drugs and improve treatment for people living with NF.
2026 conference summary
This June, the Children’s Tumor Foundation convened the 22nd annual NF Conference in Denver, Colorado, bringing together scientists, clinicians, industry partners, and patient advocates from around the world to share the latest research in all forms of neurofibromatosis and schwannomatosis.
This year’s meeting offered an opportunity to reflect on the field’s progress from discovery to impact: how far we have come since the discovery of the genes that cause NF, and how much work remains for patients still waiting for effective treatments.
Meet NF Researchers in Australia
A series of interviews with speakers from the USA NF Conference 2026
Dr Alexandra O’Donohue
Dr O’Donohue is a Postdoctoral Research Fellow in the Bioengineering & Molecular Medicine Laboratory at the University of Sydney.
Dr Yemima Berman
Dr Berman is a Clinical Associate Professor and Head of the Department of Clinical Genetics, including the Neurofibromatosis Clinic at Royal North Shore Hospital in Sydney.
Professor Jonathan Payne
Prof Payne co-leads the Brain and Mind research group at the Murdoch Children’s Research Institute in Melbourne.
Key findings for patients and carers
Learn about the latest developments without the medical jargon, from a selection of presentations.
Towards treating weak bones in NF1 and preventing tumours in NF2
The information provided below is a combined summary of two presentations by Dr Alexandra O’Donohue at the 2026 NF Conference in the United States.
Understanding routine health surveillance & transition of care in NF1
The information provided below is a combined summary of two presentations at the 2026 NF Conference in the US, selected by Dr Yemima Berman for communication to the NF Community in Australia
The many faces of NF1 and what this means for neuropsychological testing
The information provided below is a summary of a recent neuropsychological study in NF1 within the context of an expert panel discussion on brain development in NF1 at the 2026 NF Conference in the US.
Hormonal imbalance in NF1 and the complexity of pain in focus
The information provided below is a combined summary of two presentations at the 2026 NF Conference in the United States, selected by Dr Alexa Brown for communication to the NF Community in Australia.
NF2-SWN: The burden of repetitive tumour imaging addressed
The information provided below is a summary of a recent research study on NF-2 Related Schwannomatosis (NF2-SWN) at the 2026 NF Conference in the US. This inspiring presentation features the latest research project by Dr Frank Buono from Yale University.
How to read the news articles?
The news articles provide plain-language reflections on the presentations, discussions and emerging research shared at the 2026 NF Conference organised by the Children's Tumor Foundation (CTF)-USA. It is written with the Australian audience in mind and intended for individuals and families who would like to hear about current developments in NF research and care.
Some of the research touched on is well established, while other work is in the early stages of development. It is important to remember that:
Not every research finding will be relevant to every person with NF.
Promising early results do not always lead to new evidence-based treatments or changes in clinical care.
Access to new therapies may vary between countries and over time.
Research findings should not be used as a substitute for personalised medical advice.
If you would like to understand whether any of the topics discussed here are relevant to you or your family member, we encourage you to discuss them with your treating specialist or healthcare team.
Key findings for Health Care Professionals
Dive in to the latest insights and updates with all the important details, from a selection of presentations.
Research aimed at treating porous bones in NF1 & preventing tumours in NF2
The information provided below is a combined summary of two presentations by Dr Alexandra O’Donohue at the 2026 NF Conference in the United States.
The power of routine health surveillance & transition of care in NF1
The information provided below is a combined summary of two presentations at the 2026 NF Conference in the US, selected by Dr Yemima Berman for communication to the NF Community in Australia
The many neurodevelopmental phenotypes in NF1: How to best research, assess and treat?
The information provided below is a summary of a recent neuropsychological study in NF1 within the context of an expert panel discussion on brain development in NF1 at the 2026 NF Conference in the US.
Don’t miss the clues to endocrinopathy in NF1 nor the complexity of pain
The information provided below is a combined summary of two presentations at the 2026 NF Conference in the United States, selected by Dr Alexa Brown for communication to the NF Community in Australia.
NF2-SWN: AI-assisted tumour imaging for the better
The information provided below is a summary of a recent research study on NF-2 Related Schwannomatosis (NF2-SWN) at the 2026 NF Conference in the US. This inspiring presentation features the latest research project by Dr Frank Buono from Yale University.