Each year, Rare Disease Day is celebrated on the last day of February
PharmaPhorum asked Siren Interactive to write a series of blog posts about the world of rare diseases. In this six-part series, titled “Rare is different,” we’re showing how working within rare diseases is unlike other pharma markets, particularly in the knowledge and influence wielded by patients and caregivers. Below is an abstract from the final post: Innovation Happens at the Margins.
Due to the nature of the condition, a patient diagnosed with any one of the more than 7,000 rare diseases and disorders is part of a niche population on the margin of medicine. Their treatments establish the border — the edge of the latest medical advancements resulting from significant financial investment, targeted research and relentless patient advocacy.
New rare diseases are discovered every year. Most are inherited and caused by genes mutations. Others are the result of environmental and toxic conditions. All that has been or will be achieved in the advancement of rare disease therapies started with an impassioned force of patient advocates focused on an urgent mission. Their collective voice pushes government, business and science to a common ground that provides the platform for innovation at the margins.
30 days before Rare Disease Day
These are some of the reasons why increasing awareness and education around rare disorders is so important, and why Siren Interactive supports Rare Disease Day. Each year, Rare Disease Day is celebrated on the last day of February. This year, a leap year, Rare Disease day is February 29 – a rare day itself.
Today, 30 days before Rare Disease Day, we’re using this blog to participate in the Children’s Rare Disease Network Rare Blog Hop. Check out some of the other posts below. Here are some ways you can take action:
- Help unite 1 Million for RARE on the Global Genes Project Facebook page so that we can increase awareness of the rare disease community
- Wear That You Care (using jeans to call attention to genes that can cause rare disease) on Rare Disease Day and encourage others to do so.
- Donate a bracelet to the 7000 Bracelets for Hope campaign and bring hope to a child/family living with rare.
- Are you living with rare? Sign up to receive one of the 7000 Bracelets for Hope and also join the R.A.R.E Network.
On February 29, we look forward to celebrating all the progress that has been made in rare diseases in the past year.