We Scream Rare

Peak body for Australians with rare diseases including genetic disorders An estimated two million Australians live with a rare disease. Approximately 80% of rare diseases are genetic disorders.

What does EQUITY mean for people
living with a rare disease?

Equity in practice means meeting people’s specific
needs and eliminating barriers preventing
their full participation in society. For people
living with a rare disease equity means social
opportunity, non-discrimination in education and
work, and equitable access to health, social care,
diagnosis and treatment.
On Rare Disease Day we call for action for
people living with a rare disease to have equal
opportunities to realise their full participation
in family, work and social life.
The long-term goal of Rare Disease Day over the
next decade is increased equity for people living
with a rare disease and their families

RARE DISEASE DAY EVENT!!

Hey everyone, Rare Disease Day is only 25 days away and this year I will be doing my part as a rare disease patient myself and holding 2 events!

As Rare disease day falls on a Thursday, I will be doing an online event that night. I will also be holding a community event which will be moved to a weekend.

I have been in contact with the Playford council who were so lovely and helpful, and I am just waiting on hearing back so I can set a location and get all the details together.

In the mean time get your colours ready and make sure to check back here daily for information, news, and new posts about rare diseases 🦓

Rare Disease Day Official Video 2024 Rare Disease Day 2024 shines a light on the global and diverse community of over 300 million people living with a rare disease and their families. Learn more...