Melbourne Member Meet-Up
Published on: 21 March 2024

In early December, we were delighted to host our Melbourne member meet, uniting numerous individuals for connection and learning.

‘Blossoming Together’ was our focus as it symbolises our community’s growth, resilience and vibrancy. Just as the diverse flowers in a botanical garden come together to create a tapestry of colour and life, so do our members. The botanical garden was the perfect backdrop to celebrate our commitment to supporting each other on our unique journeys.

On the day, attendees heard from various speakers, including Carolyn Dews, IDFA CEO and Lyn Barker, IDFA Member – who introduced and hosted the event.

Dr Theresa Cole outlined how PIs can be detected earlier and the future vision for paediatrics. With SCID newborn screening being adopted nationwide, there is a greater opportunity for early diagnosis of PIs.

Dr Emily Edwards, AusPIPS, presented a general background to genetic mutations in the field of PIs and key areas of current research. She provided an overview of her specific research areas and highlighted some key implications for future treatments for PIs.

Sharon Bard, a Wellbeing Counsellor, explained the hidden nature of anxiety, particularly among people living with rare conditions like PI. She provided members with an opportunity to understand and practice her recommended techniques to support anxiety to enable and empower members to move forward with their day-to-day management and self-care.

What an incredible gathering! Smiles, laughter, and meaningful connections made this event truly special.