Originally published by Neos Kosmos on 11 October 2021. As chair of the not-for-profit Thalassaemia and Sickle Cell Australia (TASCA), Peter Verveniotis knows a thing
Through lobbying and engaging healthcare providers, TASCA advocates on behalf of patients and their families for equitable access to best care and support as well as adequate funding for impactful research into the treatment of haemoglobin disorders.
TASCA works to raise public awareness and reduce the stigma of haemoglobin disorders through school visits, public events and media engagement. We believe in the importance of knowing your own genetic status through carrier testing.
TASCA believes that care should extend beyond the treatment centre. We support those affected by haemoglobin disorders through peer support and social events. We also empower patients and families through education and information.
Here at TASCA, we are driven by a single goal – to do our part in making the world a better place for those living with genetic blood disorders. We strive to build productive relationships and make a positive impact with all of our pursuits. We want to empower those living with a genetic blood disorder so that they can live their best life and provide them with support each step of the way.
7% of the global population are carriers of a gene that can cause a haemoglobin disorder. Carrier couples have a 25% chance of conceiving a child with a haemoglobin disorder during every pregnancy.
Carrier screening tests are available and free with a referral from many GP clinics. Know your risk and get tested today.
What are haemoglobin disorders
Haemoglobin disorders are inherited blood disorders where haemoglobin is not formed properly or is not produced in enough quantities.
This results in less or no functioning red blood cells causing lack of oxygen available to the body, as well as many secondary complications. The most common forms of haemoglobin disorders are sickle cell disease and thalassaemia.