Families in NSW with a child (or children) who have a rare or undiagnosed disease can apply for Variety’s Rare Care Service. The child can be up to 18 years of age and needs to be an Australian citizen or have permanent residency.

About the Variety Rare Care Service

Variety NSW provides a Rare Care Case Management Service to families affected by rare diseases and conditions.

Case Managers in Sydney and Newcastle support and advocate for families who have a child or children with a rare disease, by providing practical and emotional assistance. They link the family with relevant services, advocate on their behalf, ensure the family receives the correct benefits and can help obtain funding for medical equipment and services.

The Variety Rare Care Service aims to support the family as a whole, not just the child.

A rare disease is any disorder or condition that is life-threatening or chronically debilitating, which is also statistically rare. For the purposes of Variety’s Rare Care Service, rare conditions are defined as a prevalence of 1 in 2500 or less. Variety uses ORPHANET (an internationally recognised list of rare diseases) as a primary resource for confirmation of diseases and conditions.

When a child has a rare disease, diagnosis is often difficult or extremely delayed and families can experience isolation, psychological stress and financial hardship. The emotional burden and lack of practical support is a major issue in the treatment and management of rare diseases.

  • There are approximately 8,000 rare diseases, affecting 6-8% of the population
  • 75% of rare diseases affect children
  • 3 in every 50 Aussie kids have a rare disease

The Variety Rare Care Service can help.

Many families of children with a rare disease may feel isolated and that there is a lack of information and support available to them. Variety Case Managers tailor support plans to ensure the family’s needs are met, and eases some of the pressure of taking care of a child or children with complex needs.

How can families access this service?

A referral form will need to be filled out by a Parent/Carer or a Medical Professional or other support person on behalf of the child.

This form can be completed online via the link below.

We are here to help – please contact us on 02 9819 1000 if you need assistance with the form.

Rare Care Referral Form