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A brighter future for kids with brain cancers.

The Rare Brain Tumour Consortium – Achieving Strides through Global Collaboration and Centralization

Rare childhood brain tumours present unique challenges to medical researchers and the healthcare community.  They are complex, aggressive, and hard to study due to limited funding as well as difficulty gathering enough patient data to allow for statistically significant findings.  The only way to advance our knowledge is through collaboration.   

Established and led by Dr. Annie Huang at the Hospital for Sick Children (SickKids) in Toronto, Canada, The Rare Brain Tumour Consortium (RBTC) is a pioneering international collaborative network of clinicians, scientists, patient advocates, and families dedicated to making rare brain tumours in children a curable disease.  The consortium fosters a rich environment for sharing knowledge, resources, and data. This collaborative spirit is at the heart of the RBTC’s mission to improve survival for children with rare brain tumours by developing better diagnostic tools as well as new drugs and treatments.  The RBTC also links doctors and researchers around the world and connects families with clinical experts for the best available treatment options.   


How Does the RBTC Work? 

The RBTC operates through a large global network of research institutions and medical centres that specialize in paediatric neuro-oncology.  Through the RBTC, patient data on diagnosis, demographics, history, treatment, and outcomes is collected, analyzed and stored centrally.  Biological material, including tumour tissue, cerebrospinal fluid, and blood, is also collected for analysis and research.   

A child’s data can be donated at any point in the process – whether that child is currently in treatment, has survived and is post-treatment, or even if the child did not survive. 


Data Sharing 

Central to the RBTC’s success is the sharing of research data among the global community.  Physicians and researchers pool their resources and expertise to help gain a comprehensive understanding of these rare childhood brain tumours.  This paves the way for the identification of patterns and potential treatment avenues.   



The consortium started out with 14 patients.  To date, researchers have analyzed the genetic makeup of more than 3,000 tumour samples of over 2,100 patients from over 140 centres in 35 countries — the most extensive data gathered in this area worldwide.   

The RBTC has already facilitated revolutionary, quantitative advances in our knowledge about 3 types of rare childhood brain cancers, including ATRT, ETMR and Pineoblastoma. 


A Legacy for the Future 

Once a child’s tumour sample and other data are collected and stored, they will remain available to be used over and over again for years to come as new diagnostic and research tools are developed. 

“We want parents to understand how powerful this is… The sharing of even the most minimal info of a child with such a rare disease…there are no words to describe how valuable this is.” – Dr. Huang. 

At first, some thought that the idea of such a collaborative effort was crazy and virtually impossible to achieve, but Dr. Huang was determined to make it happen.  Clearly, these efforts have been worthwhile.  The Rare Brain Tumour Consortium has moved the field forward in a meaningful way, and it is continuing to do so.  It is a beacon of hope for children and families affected by rare brain cancers.  Through collaboration, centralization, cutting-edge research, and a commitment to improving diagnostic tools and treatment outcomes, the RBTC is making significant strides in the fight against these devastating diseases. With ongoing support from organizations and parent advocates, including Tali’s Fund, The Rare Brain Tumour Consortium is helping us to move toward a future where every child diagnosed with a rare brain tumour can access safer, more effective treatments and can be given the opportunity to lead a healthier life. 


The Role of Tali’s Fund in Supporting the RBTC 

Tali’s Fund plays a vital role in supporting the RBTC’s mission. By raising funds, increasing awareness, and advocating for research into rare brain tumours, Tali’s Fund contributes to the consortium’s efforts. Our dedication helps ensure that the RBTC has the resources needed to continue its groundbreaking work. 


To learn more about The Rare Brain Tumour Consortium, visit the links below: 

Tali’s Fund: Tali’s Fund – Rare Brain Tumour Consortium 

SickKids: RBTC – SickKids Lab 

Dr. Annie Huang Interview: https://www.youtube.com/watch?v=7qzLXYM7Jmw&ab_channel=BEaTSResearchRadio