Support
The Nathan Centre for Rare Diseases aims to support children and their families affected by rare diseases. We do this in several ways:
Hospital
Hospital visits
Children with rare diseases are very often the “frequent flyers” for admissions into hospitals, placing significant burden on the child, their primary carer, as well as their families and hospital staff. Our support team connects with these families in hospital during their stay. We provide information of available services and resources that may further assist these families.
Hospital packs
We provide hospital packs to ease the stress associated with an unplanned or planned trip to hospital. These packs contain practical items such as parking permits, fuel vouchers, café vouchers, mobile phone chargers*, as well as items to distract the child from a stressful environment. These include iPad*, Nintendo DS*, colouring-in books, textas, and sticker books. These packs introduce families to The Nathan Centre, connecting them to the services we offer.
Community
The Nathan Centre
Children aged between 4 and 12 can attend the Nathan centre for a morning of fun and friends. Activities, sports, drama, art and more promote a sense of belonging, social inclusion, and interaction with others.
Similarly, the Nathan centre aims to improve the health and wellbeing of busy carers, who can have a few hours break to shop, rest, visit friends, or even take a nap to recharge the batteries!
Family events
Family events take place every three months, and include BBQ’s, picnics, bowling, movies, and more. These events allow families affected by rare diseases to connect with each other, establish commonalities, and form strong networks within the community.
Independent patient advocacy
Navigating through the healthcare system with a rare disease can be extremely frustrating and overwhelming. Obtaining a diagnosis is often delayed, and when one is found, it can have a devastating impact for families. Rare diseases are complex to manage and often require a multidisciplinary team of medical professionals over a protracted period of time. We offer an independent patient advocacy service for families who require assistance with this process. We listen to families and assess on a personalised, case-by-case basis. We can attend appointments with you, organise second opinions, help to make sense of medical terminology, case management, research available treatments, and provide information about the latest research in the world.