Rare Disease Day Highlights Need for More Research Into Scleroderma

Last week’s Rare Disease Day had one overarching topic: research! Rare diseases are often overlooked by governments around the world when it comes to financing important research. They tend to use taxpayer dollars to fund research into more well-known diseases.

Find out more about the importance of raising the public profile of scleroderma here. 

Historically this has meant that many disease research programs are woefully underfunded, forcing them to rely on charities and non-profit organizations to grow awareness and organize fundraising. Unfortunately, this slows advancements in drugs and therapies, which could ultimately lead to finding a cure.

Our resident columnist Nicola Whitehill wrote about how scleroderma patients’ needs are not being met when it comes to research. Because scleroderma can affect different parts of the body, there are many areas in which research could improve the current medications and treatments that are being offered to patients.

This year’s Rare Disease Day hoped to highlight the importance allocating research money to lesser-known diseases. More research into areas like diagnosis, treatments, disease education and best practices could greatly benefit the scleroderma community and those of other rare diseases. Find out more about Rare Disease Day here.

An Australian family is about to take a 500,000-step trek to raise awareness and money for scleroderma research. 

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