Scientific and Patient Events

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Maddie Riewoldt’s Vision is committed to holding regular scientific and patient events to share knowledge of the latest research in Bone Marrow Failure Syndromes and to strengthen our collaborative networks.


Upcoming Events

2024 Patient and Family Educational Session – Gene editing for inherited Bone Marrow Failure Syndromes 

We are excited to announce that registrations are now open for the 2024 Maddie Riewoldt’s Vision Patient and Family Educational Session on ‘Gene editing for inherited Bone Marrow Failure Syndromes’.

This session will be held virtually via Zoom on Wednesday 18 September, 7.30pm – 8.30pm.  

We are delighted to have secured the following gene editing experts who will provide an overview of these innovative technologies and the research currently being undertaken in Australia via ‘PAGETURNA’ (Pioneering Application of Gene Editing to Transplant Using RNA) to develop new gene therapies to correct disease-causing mutations in blood stem cells. 

Associate Professor Andrew Deans, St Vincent’s Institute of Medical Research. 

Associate Professor Andrew Deans is the Head of the Genome Stability Unit at St. Vincent’s Institute (SVI) in Melbourne, Australia. Andrew completed his PhD studies with Professor Grant McArthur at the Peter MacCallum Cancer Centre, where he developed expertise relating to role of the cell cycle and DNA repair development and treatment of breast cancer.

From 2006 to 2011, he undertook postdoctoral research with Professor Steve West at the London Research Institute, publishing several papers on the role of DNA repair proteins in familial cancer syndromes such as Fanconi anaemia and Bloom Syndrome. Andrew’s research now focuses on the cellular process of DNA repair, particularly related to genome instability disorders that cause bone marrow failure and cancer in children and young adults.

He also leads PAGETURNA (Pioneering Application of Gene Editing to bone marrow Transplant Using RNA), a group of Australian gene editors and bone marrow transplant physicians funded by the Medical Research Future Fund, and Maddie’s Vision.  

Dr Lorna McLeman, Royal Children’s Hospital and St Vincent’s Institute of Medical Research. 

Dr McLeman is a Paediatric Oncologist trained at the Royal Children’s Hospital in Melbourne with a special interest in bone marrow transplant and advanced stem cell therapies including gene editing.

Dr McLeman is a PhD candidate with the University of Melbourne and a member of the Genome Stability Unit at St Vincent’s Institute of Medical Research where she is investigating precision gene editing for Fanconi Anaemia. She is also a research fellow with reNEW Novo Nordisk Foundation Centre for Stem Cell Medicine. 

The event will include two presentations from our guest speakers, followed by a 30-minute question and answer session to address patient and family queries regarding gene editing and its role in the treatment of inherited Bone Marrow Failure Syndromes.  

We look forward to seeing you on Wednesday 18 September!  


Past events

2024 CRE Expert Webinar Series on Bone Marrow Failure Syndromes – Expert Webinar 3

Telomere-Mediated Bone Marrow Failure 

The Maddie Riewoldt’s Vision Centre of Research Excellence in Bone Marrow Biology, along with our exclusive sponsor Novartis, was proud to present the third Expert Webinar for our scientific community featuring guest speakers, Professor Mary Armanios M.D. and Professor Tracy Bryan on Thursday 12 September.

Mary Armanios M.D., is Professor of Oncology, Genetic Medicine and Pathology at the Johns Hopkins University School of Medicine and the Director of the Telomere Center at Johns Hopkins University, Baltimore, United States. Mary will present on “Clonal evolution in telomere-mediated bone marrow failure.” 

Tracy Bryan is Head of the Cell Biology Unit at Children’s Medical Research Institute in Sydney and Professor at the Faculty of Medicine and Health at the University of Sydney, Australia. Tracy will speak about “The role of functional genomics in diagnosis of telomere-mediated bone marrow failure.”  

We would like to acknowledge and extend our sincere gratitude to our exclusive sponsor for their generous support of this webinar series: 


2024 Patient and Family Educational Session – Diamond-Blackfan Anaemia

Maddie Riewoldt’s Vision was delighted to host our second Patient and Family Educational Session for 2024, focusing on Diamond-Blackfan Anaemia    

Thank you to our leading experts who provided an introduction to Diamond-Blackfan Anaemia and an overview of the latest research and treatments for this condition.

  • Associate Professor Amee George –  Group Leader, Genome Science and Cancer Division, ANU Centre for Therapeutic Discovery, John Curtin School of Medical Research, The Australian National University, Canberra.
  • Dr Pasquale Barbaro – Paediatric Haematologist, Queensland Children’s Hospital, Brisbane.

If you missed the session, you can watch the recording here:

2024 CRE Expert Webinar on Bone Marrow Failure Syndromes

The Maddie Riewoldt’s Vision Centre of Research Excellence in Bone Marrow Biology, along with our exclusive sponsor Novartis, was proud to present the second CRE Expert Webinar for our scientific community featuring international guest speaker, Professor Alan Warren.

Expert Webinar Two – Schwachman-Diamond Syndrome 
Thursday 25th July

If you missed the session, you can watch the recording here:

Alan is currently Professor of Haematology at the University of Cambridge, United Kingdom. His presentation discussed how new technologies are providing insights into the molecular basis of the ribosomopathy Shwachman-Diamond syndrome.

We would like to acknowledge and extend our sincere gratitude to our exclusive sponsor for their generous support of this webinar series:

2024 Patient and Family Educational Session – Aplastic Anaemia

Maddie Riewoldt’s Vision was delighted to host our first Patient and Family Educational Session for 2024, focusing on Aplastic Anaemia.    

Thank you to our leading haematology experts who provided an introduction to Aplastic Anaemia and the role of transplantation in adult and paediatric patients. 

  • Dr Lucy Fox – Haematologist, Peter MacCallum Cancer Centre  
  • Dr David Hughes – Paediatric Haematologist and Bone Marrow transplant specialist, Royal Children’s Hospital 
  • Professor David Ritchie – Haematologist and Bone Marrow transplant specialist, Royal Melbourne Hospital 

If you missed the session, you can watch the webinar recording here:

2024 CRE Expert Webinar Series on Bone Marrow Failure Syndromes 

The Maddie Riewoldt’s Vision Centre of Research Excellence in Bone Marrow Biology, along with our exclusive sponsor Novartis, was proud to present the inaugural Expert Webinar for our scientific community featuring international guest speaker, Dr Austin Kulasekararaj

Expert Webinar One – Aplastic Anaemia Guidelines 
Monday 27 May 

If you missed the webinar, the recording is below.

Austin is a consultant haematologist at King’s College Hospital and an honorary senior clinical lecturer at King’s College, London, United Kingdom. We are delighted he will be presenting an update on the Aplastic Anaemia guidelines recently published by the British Society for Haematology. 

Austin is a consultant haematologist at King’s College Hospital and an honorary senior clinical lecturer at King’s College, London, United Kingdom. We are delighted he will be presenting an update on the Aplastic Anaemia guidelines recently published by the British Society for Haematology. 

We would like to acknowledge and extend our sincere gratitude to our exclusive sponsor for their generous support of this webinar series: 

2023 National Symposium on Bone Marrow Failure Syndromes

Maddie Riewoldt’s Vision was proud to hold the 2023 Maddie Riewoldt’s National Symposium on Bone Marrow Failure Syndromes in Melbourne from Saturday October 14 – Sunday October 15 at the Victorian Comprehensive Cancer Centre.

Our scientific symposium included international experts Dr Sharon Savage (Clinical Director of the Division of Cancer Epidemiology and Genetics National Cancer Institute, United States) and Professor Rodrigo Calado (Chair, Department of Medical Imaging, Hematology, and Clinical Oncology Ribeirão Preto School of Medicine, University of São Paulo, Brazil), along with 28 national speakers whose presentations covered a mix of basic science, translational research, gene therapy, clinical research and patient case studies across both acquired and inherited Bone Marrow Failure Syndromes.

We were thrilled to have over 150 delegates attend across both days to learn, collaborate and network with local and international Bone Marrow Failure Syndrome experts.

“Fantastic breadth of topics (basic science, translation, gene therapy, clinical adult/paeds, immune and inherited BM, non-haem manifestations), plus a predominantly local/emerging research focus rather than a “big pharma” focus. Very collaborative meeting that fostered discussion among all attendees.

Patient and Family Forums 2022

Our 2022 Patient and Family virtual forums brought together some of the world’s best doctors and researchers to present the most up-to-date information for those affected by Bone Marrow Failure Syndromes. 

View the recordings below: 

Session 1  Bone Marrow Failure Syndromes – general topics related to care of patients with Bone Marrow Failure Syndromes. Watch the session recording
Session 2  Fanconi Anaemia. Watch the session recording
Session 3  Telomere Biology Disorders, including Dyskeratosis congenita and related disorders. Watch the session recording
Session 4: Ribosomopathies, including Diamond Blackfan Anaemia and Shwachman Diamond Syndrome. Watch the session recording

Thanks to our generous sponsors for making this event possible

National Symposium & Patient and Family Forum 2021

“Excellent chairs, speakers, topics and discussions. Very thought provoking and enlightening.”

Building on the success of the 2019 Symposium, the CRE was delighted to host the 2021 National Symposium on Bone Marrow Failure Syndromes on Thursday 27 May to Saturday 29 May. Due to the pandemic, it was an entirely virtual event, incorporating a full day Patient and Family Forum and a one and a half day Scientific Symposium. 

View the recording

Patient and Family Forum 2020

The Maddie’s Vision inaugural Patient and Family Forum took place on Friday 28 August, 2020. The virtual event was incredibly well attended — over 200 registrants, with a live audience of nearly 150 participants, viewed the 4-hour program.

View the recording

National Symposium 2019

Australia’s Inaugural National Symposium on Bone Marrow Failure Syndromes took place across two days in May 2019 at the Victorian Comprehensive Cancer Centre, Melbourne. The Centre of Research Excellence was very proud to organise this scientific symposium which explored both clinical and research aspects of Bone Marrow Biology, acquired and inherited Bone Marrow Failure Syndromes.

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