Young Australians living with rare diseases can face significant social, employment and educational barriers in life.
Many can also experience isolation and exclusion from their peer groups.
But Basit Bahram is trying his best to overcome these challenges.
The 27-year-old was born with epidermolysis bullosa (EB) – a rare condition that causes the skin to blister and peel at the slightest touch.
"As a young person, you are full of life. You are full of hope," Mr Bahram said.
It's estimated that around 1,000 Australians live with some form of EB.
"My skin is basically very fragile … any light brush or hard touch or anything like that could cause bruises, blistering or wounds. I've got a whole bunch of wounds all over my body," Mr Bahram said.
Mr Bahram endures a gruelling bandaging process every day, with dressings placed on his wounds.
"I clean my body in the bath with either salt and vinegar, or salt and bleach … it's like an antiseptic for my body just to kill all the bacteria," he said.
"The whole bandaging process takes up to six or seven hours a day."
Pursuing passions
Despite his struggles, Mr Bahram managed to graduate from Macquarie University with a Bachelor of Arts and a Bachelor of Islamic Studies from Charles Sturt University.
But his dream of pursuing a PhD had to be put on hold.
"I felt like if I kept pushing myself towards a PhD, I was going to aggravate my skin a lot more, so that was something that I had to let go," he said.
Mr Bahram's condition has worsened as he has gotten older, and with no cure for EB, he has tried to manage it as best as he can.
In 2016, he lost his 'best friend' — his 23-year-old brother Milad — who also suffered from EB.
"I genuinely believe that with all the struggles and the suffering that he went through that he is in a better place."
Big dreams
Peppa Rasmussen-Breitinger knows the difficulties that young people living with rare diseases face all too well.
The 20-year-old has scleroderma — a chronic condition that can cause hardening of the skin and can also affect the connective tissue and internal organs.
She is one of about 6,000 Australians who suffer from scleroderma.
"I get fatigued very easily. I have trouble standing a lot of the time and I can't regularly exercise," Ms Rasmussen-Breitinger said.
"I'm also quite immunosuppressed due to the scleroderma causing my kidneys to fail.
"I go to university and it makes it very hard to complete all the tasks."
Ms Rasmussen-Breitinger's condition is not externally visible, which can cause some confusion during social interactions.
"If you met me in person, you'd probably think there's nothing wrong with me," she said.
"I just kind of learnt that I needed to distance myself from people who didn't understand."
But the design student refuses to let her scleroderma get in the way of her career goals and hopes to become a merchandiser or art director in future.
"It's definitely challenging trying to do all these things with a condition, but I just try and keep going," Ms Rasmussen-Breitinger's said.
Calls for support
The peak body for Australians living with a rare disease, Rare Voices Australia (RVA), chief executive Nicole Millis says young people need better support services as the current system is fragmented.
"Young people living with a rare disease find themselves in a world where they need to interact with different systems, whether it's the health system or the disability system, but also education and employment," Ms Millis said.
"They're often dealing with lots of different health professionals and different teams.
"We need further investment into centres of excellence that do provide that integrated service."
Ms Millis said it was also crucial for young people to be able to have a say in their own care.
"We really need to be better at listening to what's important to them."
