300 million people living with a rare disease worldwide
Over 6000 different rare diseases
72% of rare diseases are genetic
On Rare Disease Day, Sunday 28 February, InGeNA is proud to support the global movement to raise public awareness of rare diseases and the impact on people’s lives.
It puts the work of the genomics community into perspective to know one in 20 people will live with a rare disease at some point in their life.
The diagnosis for rare genetic disorders can be a convoluted road. Consumers, patients and carers need greater access to testing and treatment and support networks.
InGeNA is on a mission and working collaboratively to integrate genomics into healthcare, delivering better health outcomes for patients.
We know genomics has benefits for patients with rare diseases today, and the promise of broader community preventive care in the future. The disease may be rare but as communities we share a lot. Speak up for #RareDiseaseDay.
David Bunker FAIDH
Chair, InGeNA
Who’s on your team – because none of us can do it alone
Focussing on rare disease is not something the genetic, undiagnosed and rare disease community need to think about or have a special day for – it is our every day. Rare Disease Day, 28th February is so important because it’s our day to say to the rest of society – we are here, we are important, we are vulnerable and we need your help. Today we say, celebrate our similarities and don’t focus on our differences. Today we say enough is enough, our community deserves the same considerations of our needs, the same opportunities to live our best lives, the same courtesy of choice and access as everyone else. We also say to each other and you – lets work together, lets seek opportunities, lets harness our strengths, lets collaborate for change, lets be a force – but while we focus on it today – lets do it every day.
That’s why our theme at the Genetic Support Network of Victoria for Rare Disease Day 2021 is ‘Who’s on Your Team’ because none of us can do it alone.
We challenge society – are you ready to agree that, from a social justice perspective, it is right and just to give all persons living with a rare disease access to the testing and treatments they so urgently need, as soon as these exist and are available?
Are you ready to agree that it is no less important, ethical and desirable to improve the health of a small fraction of the population with dire unmet medical, social and civil needs, than to address the needs of the multitude?
Today and every day we say – indifference and/or inaction is not an option. Please take a moment to think about how you can help and check out our website gsnv.org.au.
