Dialog Box

Scientific and Patient Events

Patient and Family Forums 2022

Registrations are now open for this year's event which will consist of four x 2-hour specialised sessions run weekly (via Zoom) in the evening during November. Each session will concentrate on a specific diagnoses as per the dates outlined below:

Session 1 was held on Wednesday 2 November:-
Bone Marrow Failure Syndromes – general topics related to care of patients with Bone Marrow Failure Syndromes.

Download/view the session 1 program (PDF)

Watch the session recording

Session 2 was held on Wednesday 9 November:-
Fanconi Anaemia.

Download/view the session 2 program (PDF)

Watch the session recording

Wednesday 16 November – No session

Session 3 was held on Wednesday 23 November:- Telomere Biology Disorders, including Dyskeratosis congenita and related disorders.

Download/view the session 3 program (PDF)

Watch the session recording

Session 4: Wednesday 30 November, 7 pm – 9 pm AEDST*
Ribosomopathies, including Diamond Blackfan Anaemia and Shwachman Diamond Syndrome.

Download/view the session 4 program (PDF)

Watch the session recording

* Australian Eastern Daylight Saving Time (Melbourne/Sydney)


Thanks to our generous sponsors for making this event possible:

Royal Melbourne Hospital Foundation

Platinum sponsor

The Royal Melbourne Hospital Foundation provides financial support in areas of patient care, including the purchase of life-saving medical equipment, and ensuring we can continue our world-class research, finding cures and improved treatment for many of Australia’s biggest killers, including stroke, cancer and heart disease.

Visit The Royal Melbourne Hospital Foundation website.


Platinum sponsor

Alexion is focused on providing innovative treatments to patients with life-threatening rare diseases for which there are few, if any, effective treatment options. Alexion established operations in Sydney in 2008 to serve patients in the Australian region. Alexion aim to work in partnership with stakeholders including healthcare providers, patient advocacy organisations, and government in order to best serve patients. By expanding the knowledge and awareness of rare diseases, Alexion aim to help the medical community improve the process for diagnosis and treatment. Alexion’s goal is to bring hope to patients and families by delivering life-changing therapies.

Visit the Alexion website

SERVIER Laboratories

Gold sponsor

Servier is an international pharmaceutical company governed by a non-profit foundation. Proudly independent, we are committed to therapeutic progress to serve patient needs, with the help of healthcare professionals. Our therapeutic areas include cardiovascular disease, mental health, oncology, and diabetes.

Visit the Servier website

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. 

Learn more here and view recording of Patient & Family Forum

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.

 Learn more here and view 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 CRE 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.

Learn More