Providing an opportunity for both Australian and International professionals to collaborate on all aspects of Niemann-Pick type C Disease.
From July 19 to 20, 2019, the Australian NPC Disease Foundation (ANPDF) hosted the inaugural NPC Family Conference at RACV City Club and co-hosted the NPC Scientific Symposium with The Florey Institute of Neuroscience and Mental Health in Melbourne, Australia.
“We are so proud to finally be able to bring together scientists, clinicians and patients in the Australian NPC community for the first time,” said ANPDF event organiser Deanna Carpino. “The discussion and awareness can be as equally important as the data generated from the research.”
Carpino noted that where the symposium topics were centred around the scientist and clinician perspective, encouraging patient-empowered data; the family conference held a more relaxed, yet informative atmosphere, including sessions focussed on the carers of NP-C patients. The ANPDF provided significant financial support for the families of NPC sufferers to attend, as did many sponsors who supported accommodation, travel, meals and refreshments.
Attendees of the family conference were invited to an opening dinner to celebrate our first conference, whilst having a chance to informally meet others from around the country. They gathered together the following day, and were pleasantly welcomed by Mandy Whitechurch, Founder and President of the Australian NPC Disease Foundation.
Over the course of 12 sessions, all attendees left the Family Conference understanding more about NPC, feeling more secure about upcoming challenges, and hopefully realising that they have support from many unlikely places within the NPC community.
The day was followed by the inaugural NPC Charity Gala Dinner attended by many from both the symposium and the conference. It was a fantastic evening filled with celebration and promises to see each other again. Read more here.
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