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Patient and Family Forum

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

The forum was a pivotal moment in the evolution of Maddie’s Vision. 

It was the first time a formalised environment was created for our patient and family community alongside researchers, clinicians and allied health.

Watch the webinar recording below.

Expertly hosted by Professor David Ritchie, the content was a mix of clinical presentations, powerful patient stories and perspectives, information about the registry, the biobank, trial opportunities and future directions.

The aim of the forum was to bring people together to acknowledge, support and inform. 

The platform allowed opportunity to connect and ask questions. The agenda provided access to the latest information from clinicians and scientists at the forefront of Bone Marrow Failure Syndrome clinical care and research.

We are tremendously grateful to our exceptional panelists.

“I just wanted to pass on my sincere thanks to all involved. It really feels like such a lonely road at times and it was so nice to hear the advances and hope for the future. MRV are really making a difference and we are really grateful!” – parent of patient

“A great session. From a clinician’s perspective, we are not always afforded the time to hear the patient’s complete journey. The opportunity to hear the patients’ stories in the forum was very special.” – haematologist

Many thanks to the organising sub-committee, expertly chaired by Dr Lucy Fox, and including Mei Ling Yeh, Dr Jessica Lake, Anna Jarmolowicz, Lou Johns, Nicky Long and Dr Simonne Neil.

And enormous appreciation to our sponsors, The Royal Melbourne Hospital Foundation and Carman’s.

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