Past Patient & Family Events
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.
Patient and Family Educational Sessions 2026
Session 1 – Monday 16 February
Diagnosing Bone Marrow Failure Syndromes: From Family History to Genomic Confirmation
Maddie Riewoldt’s Visions was proud to present the first Patient and Family Educational Session for 2026 on Monday 16 February. This free virtual session was an opportunity for patients, families and carers to learn how family history, clinical presentation and advanced genetic testing come together to guide diagnosis, treatment planning and family counselling.
We were delighted to welcome Associate Professor Piers Blombery and Erin Goode who shared their expertise during this informative session.
If you missed the session you can view the recording here:
Patient and Family Educational Sessions 2025
Session 4: From Preparation to Recovery: Navigating the Bone Marrow Transplant Journey
Maddie Riewoldt’s Vision was proud to present the fourth and final Patient and Family Educational Session for the year on Wednesday 15 October 2025. This free virtual session guided patients, families, and carers through the Bone Marrow Transplant journey – from preparation to recovery.
We were delighted to welcome Maddie Gilsenan, Yvonne Panek-Hudson, and Alexandra Rivalland, who shared their expertise during this informative session, including:
- Preparing for transplant: best practices and what to expect
- Managing challenges during the transplantation process
- Post-transplant care strategies for patients and families
- Long-term follow up and understanding possible late effects after transplant
This session gave participants the opportunity to learn, connect, and be supported by experienced nurses who specialise in bone marrow transplantation.
If you missed the session you can view the recording here:
Session 3: The potential of mRNA therapies for the treatment of Bone Marrow Failure Syndromes
Maddie Riewoldt’s Vision was proud to present this virtual educational session on Tuesday 19 August 2025.
This session introduced the National Therapeutic mRNA Platform (NTRP) and explored how emerging mRNA therapies may shape the future of treatment for Bone Marrow Failure Syndromes.
Speakers included:
- Professor Eduardo Eyras (Chair, NTRP; Australian National University)
- Associate Professor Amee George (Platform Manager, NTRP; Australian National University)
- Associate Professor Brett Scholz (Australian National University)
- Professor David Ritchie (Royal Melbourne Hospital)
- Dr Lucy Fox (Peter MacCallum Cancer Centre / Monash University)
This event fostered dialogue between researchers, clinicians, patients, and families, helping to shape community-informed research priorities for future mRNA therapies.
If you missed the session you can view the recording here:
Session 2: How can I participate in Bone Marrow Failure Syndrome research?
Maddie Riewoldt’s Vision was proud to present this virtual educational session on Wednesday 23 July 2025 for patients and families affected by Bone Marrow Failure Syndromes.
Featured guest speakers included:
- Dr Lucy Fox, Haematologist, Peter MacCallum Cancer Centre; Clinical Research Fellow, Transfusion Research Unit, Monash University
- Professor Melissa Southey OAM, Chair of Precision Medicine, School of Clinical Sciences, Monash University; Director of Biobanking Victoria
- Professor Erica Wood AO, Haematologist, Monash Health; Head of the Transfusion Research Unit, School of Public Health & Preventive Medicine, Monash University.
They shared insights on two important research initiatives:
- The Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry (AAR); and
- The Australian Marrow Failure Biobank (AMFB)
The session explored how these programs are advancing research toward improved treatments and cures and empowered patients and families to lead conversations with their clinicians by asking “How can I participate in Bone Marrow Failure Syndrome research?”
If you missed the session you can view the recording here:
Session 1: Fanconi Anaemia: Past, Present, and Future
Maddie Riewoldt’s Vision was proud to present this educational session on Wednesday 2nd April 2025, for families and patients affected by Bone Marrow Failure Syndromes, featuring:
Associate Professor Wayne Crismani, Laboratory Head, the DNA Repair and Recombination laboratory at St Vincent’s Institute of Medical Research, Melbourne, Victoria.
Associate Professor Adam Nelson, Director of Bone Marrow Transplant and Cellular Therapy at the Kids Cancer Centre, Sydney Children’s Hospital, Sydney, NSW.
If you missed the session you can view the recording here:
2024 Patient and Family Educational Session – Psychological support and symptom management during bone marrow transplantation
Maddie Riewoldt’s Vision was proud to present this educational session on Tuesday November 19, for families and patients affected by Bone Marrow Failure Syndromes, featuring the following Maddie’s Vision Fiona Riewoldt Nursing and Allied Health Fellows:
Alice Maier – Clinical Neuropsychologist at The Royal Children’s Hospital, Melbourne.
Rachel Edwards – Nurse Researcher at Children’s Health Queensland Hospital and Health Service, Brisbane.
Their presentations provided an overview of their research projects on psychological support and symptom management for young people with Bone Marrow Failure Syndromes undergoing a Bone Marrow Transplant.
If you missed the session, you can view the recording here:
2024 Patient and Family Educational Session – Gene editing for inherited Bone Marrow Failure Syndromes
Maddie’s Vision was proud to present this Patient and Family Educational Session on Wednesday 18 September featuring the following gene editing experts:
Associate Professor Andrew Deans, St Vincent’s Institute of Medical Research.
Dr Lorna McLeman, Royal Children’s Hospital and St Vincent’s Institute of Medical Research.
Their presentations provided an overview of innovative gene editing 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.
If you missed the session, you can watch the recording here:
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 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:
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.
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.