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nEWS

clinical trials 2025/26

Upcoming Clinical Trials in Australia for Lymphatic and Venous Malformations.

Hello, I wanted to share some exciting news regarding upcoming clinical trials in Australia that may be of interest to our community.


In the next few months, there will be two trials focusing on Apelisib for lymphatic malformations and PIK3CA-related overgrowth syndromes, as well as one trial investigating RLY-2608 for lymphatic and venous malformations. These studies are open to both children and adults.


If you or someone you know might be interested in participating, please feel free to reach out. I would be more than happy to provide additional information and discuss this further.


Thank you for your attention, and let’s continue to support each other in our journey.


To express interest please use e-mail below and attention it to A/Prof Deshan Sebaratnam 

SWSLHD-LivDR@health.nsw.gov.au


https://clinicaltrials.gov/study/NCT06789913?fbclid=IwZXh0bgNhZW0CMTEAAR68rHzLx5AN5J2QISwgmPu9aAo4JfNCH_tmaGtUmv0r48A3aWMl-p9yEmut8Q_aem_SPQEh8ywX-uvlUhKUvYvew


Dr david lord, interventional radiologist

Dr David Lord is an Interventional Radiologist who was trained at Boston Children's Hospital under Dr Patricia Burrows. In 2004 Dr Lord returned to Australia and started working at the Children's Hospital, Westmead where he was instrumental in the development of the Interventional Radiology department and the establishment of the Vascular Anomalies Clinic. He is also a founding member of the International Society of Paediatric Interventional Radiology. Dr Lord has devoted his life to the service of others, particularly those living with Vascular and Lymphatic Malformations. His remarkable skill set is complemented by a deep sense of compassion, allowing him to provide not only expert medical care but also genuine support and understanding to his patients and their families.

video - november 2024

Dr David Lord talking about Interventional Radiology and the part it plays in the care and treatment of Vascular and Lymphatic Malformations.

royal children’s hospital, melbourne. christmas appeal 2024

Sammi has a rare Lymphatic Malformation called kaposiform Lymphangiomatosis.

Sammi's parents Alex and Mark recount their journey through challenging and heartbreaking moments, as well as the incredible resilience and recovery that Sammi has shown. 

TRIGGER WARNING:

There are images of Sammi ventilated in ICU as well as talk about child and infant loss.

RARE DISEASE DAY 2025

To get involved, download materials and stay up to date with the latest internationally, click on the link below.

learn more

The Butterfly AVM Charity

The Butterfly AVM Charity

The funds raised support research efforts in collaboration with Great Ormond Street Hospital, University College of London, Royal Free Hospital and the Francis Crick Institute. 


butterflyavmcharity.org.uk

learn more

vascular birthmark foundation

Vascular Birthmark Foundation

birthmark.org

Vascular Birthmark Foundation Kids Library

birthmark.org/kidslibrary

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