Posted by Michael Wonder on 27 Apr 2026
Calls for $1 million gel to be available in Oz to fight rare genetic disease
26 April 2026 - A little boy suffering a rare disease that leaves the skin as delicate as butterfly wings has been given a new lease on life after becoming the first patient in Australia to receive groundbreaking million dollar gene therapy.
Melbourne boy Jacob Burmeister has epidermolysis bullosa, an incurable disease that causes the skin to be so delicate that even the lightest touch can cause painful blisters and wounds that aren’t able to heal.
