Focus on rare diseases and uncommon cancers
Meet Josephine
Josephine was born with beta thalassemia major, a rare genetic condition that prevents her bone marrow from producing functioning red blood cells. As a result, Josephine must undergo blood transfusions every 3 weeks to survive.
“It was very difficult growing up”, Josephine says, “not only because I was living with this illness, but because people often judge those who are a little bit different. It’s easy to lose your sense of self”.
As an adult, Josephine has set about helping others living with rare blood disorders. She writes a blog, produces videos and has published a book.
She received her Masters Degree in Social Work, despite her doubters. “So many people told me I couldn’t do things, but just did them anyway. If you don’t see your illness as an obstacle and just live with it as part of yourself, you can overcome anything. You’re not different, you’re just as magnificent as everyone else.”
To learn more about thalassemia, visit www.thalassaemia.org.cy/
Focus on rare diseases and uncommon cancers
Meet Corey
Corey is 36 years old. In 2014, he was diagnosed with Stage 4 non-small cell lung cancer ALK+ and given 6 months to live.
"Everyone was in shock", he explains. "I had never smoked, rarely drank, had a healthy diet and I am keen cyclist and swimmer. I thought I was in great health."
Corey’s condition is caused by a rare gene mutation that affects only 1–2% of people with his type of lung cancer. Luckily, recently developed targeted gene therapies are an option for Corey. They are not a cure, but can slow or stop cancer progression. "With two young kids and a beautiful wife, having a little bit more time means everything to me", he says.
To learn more about rare lung cancers, visit www.rarecancers.org.au
Focus on rare diseases and uncommon cancers
Meet Tracey
Tracey is 48 years old. After surviving breast cancer at age 40, she was recently diagnosed with non-small cell lung cancer called ROS 1+, which primarily affects non-smokers.
Tracey has three amazing children, and before her diagnosis enjoyed her dream job working with children at the local YMCA Crèche.
“I was heartbroken as I didn’t see this coming”, she explains. “I’m currently just over half way with my chemo and responding well.”
The next step is to go onto a trial drug. With the help of Rare Cancers Australia, Tracey is determined to be around to be a mother to her children and to grow old with her husband.
To learn more about rare lung cancers, visit www.rarecancers.org.au
Focus on rare diseases and uncommon cancers
Meet Angus
Angus (second right) was 10 years old when he was diagnosed with Hodgkin’s Lymphoma, a rare form of cancer that affects the lymph nodes. Until his diagnosis, Angus was a typical energetic boy; all blonde hair, tanned skin and a big smile.
After an initial successful course of chemotherapy and a period of remission, Angus’ condition relapsed.
As Angus’ mum explains, “2015 has been a tricky year. Some treatment options have been exhausted and some didn’t work well for Angus.” Thankfully, there are more treatment options to try, and Angus continues his fight with patience and dignity every day.
To learn more about Hodgkin’s Lymphoma, visit www.rarecancers.org.au
Focus
We work exclusively on rare diseases and uncommon cancers
Experience
Expertise
Insight
Reach
Providing clear and compelling information and clinical evidence to aid appropriate decision making
Supporting every stage of the development of new therapies for rare diseases. From opportunity assessment, clinical programme design and access strategies, through to global launch support
Facilitating collaboration between stakeholders to enhance understanding, promote access to effective treatments and improve patient outcomes
What we say
