Medical and life support rebates across Australia
Rebates/Concessions across Australia NSW The Life Support Energy Rebate The Life Support Energy Rebate helps eligible NSW households cover the costs of their energy bills.The rebate is for NSW customers who need, or have someone living with them who needs to use approved energy-intensive medical equipment at home. The equipment must be essential for supporting […]
Rare Disease Day
Tomorrow marks Rare Disease Day and what better way to get started than by sharing Trudy’s story. More than 300 million people worldwide live with a rare disease—and Trudy is one of those people. Trudy was just 11 months old when she was diagnosed with Cystinosis. Today at 41 looks back on her incredible journey, […]
Feeding Tube Awareness Week
Feeding Tube Awareness Week was held 5-11 February 2023. To help support #FTAW2023 we put together a list of books dedicated to children who may require a tube for food, medication or hydration support. These books help explore the journey of children with gastric tubes and NG tubes through supportive illustrations and text. These books help provide […]
AVROBIO Announces Completion of Patient Dosing in First Gene Therapy Clinical Trial for Cystinosis
“Completing the dosing of the first and only gene therapy trial for cystinosis represents a major milestone for a patient community living with a devastating genetic disease. Unmet medical needs impact the lives of patients and their family members every day,” said Stephanie Cherqui, Ph.D., lead study investigator and associate professor of Pediatrics at UCSD. […]
A better treatment option for kids and adults with cystinosis
Currently, only one treatment exists for children affected by cystinosis – a medication called cysteamine. Unfortunately, cysteamine comes with a challenging treatment schedule. Children are often required to take dozens of pills a day at 6-hourly intervals – this includes being woken at night. In addition, they are required to use eye drops every 1–2 […]
Feeding Tube Awareness Week 5-11 February 2023
Feeding Tube Awareness Week (5-11 February 2023) is about bringing everyone together who has a feeding tube, whatever the reason may be. We’ve partnered with ausEE Inc. to help raise awareness for those managing tube feeding and the day-to-day challenges they may face #FTAW2023 Cystinosis is one of the many conditions that may require a […]
Oscar’s Story
