February 28 is Rare Diseases Day
“I want more people to be aware so that together we can support those who feel invisible, but live in pain.”
More than 2 million Australian live with one of 7,000 rare conditions, often facing a lifetime of obstacles that can impact their health, family, education, employment and relationships.
Despite neurofibromatosis (NF) being one of the most common genetic neurological conditions, awareness remains far too low and treatment options far too limited.
NF is often misdiagnosed and misunderstood, burdening those living with it, and their loved ones, to be self-advocating as they search for answers, acceptance and treatment.
The Children's Tumour Foundation works to make NF a national priority.
A life with neurofibromatosis (NF)
The NF journey from diagnosis through to treatment is challenging and most of what people will experience is unknown.
The impact of NF changes with each stage of life and no two cases are ever the same.
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DOWNLOAD NF JOURNEY SOCIAL TILES
In recent times, with the outbreak of more infectious diseases, reactions from the public to those with cutaneous neurofibromas (also known as dermals, or ‘bumps’ on the skin) has ranged from quizzical looks to outright harassment.
Responses like these remind us of the importance of growing awareness about rare conditions, like NF, and reinforcing the need for a more inclusive society.
The Children's Tumour Foundation is proud to introduce FREE NF information cards that can be ordered through our online store in packs of 10 and handed out, as needed to inform members of the community about the condition.
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Order NF info cards VISIT THE QR CODE LANDING PAGE
WITH GREATER AWARENESS OF NF COMES EARLY DIAGNOSIS, IMPROVED INTERVENTIONS AND BETTER HEALTH OUTCOMES.
Share your colours on Rare Diseases Day, because rare is many, rare is strong, rare is proud.
Together, our voice is powerful.
#CONQUERNF
Learn more about Rare Diseases Day here