Rare Disease Day 2019

February 28th marks the 12th annual Rare Disease Day.

Founded in 2008 on February 29th (the rarest day on the calendar), Rare Disease Day is an annual celebration to appreciate and acknowledge patients who suffer from rare diseases. February is the shortest month of the year which makes February 28th the perfect time for such a ‘rare’ celebration.

The mission of the celebration is to give recognition, support, and awareness towards over 350 million people currently living with one of the 7,000 rare diseases. Millions of more patients are undiagnosed and will likely never be correctly diagnosed.

What is Rare?

With over 350 million patients currently diagnosed with a rare disease worldwide, what makes a rare disease ‘rare’? The U.S. considers any disease rare if it affects less than 200,000 patients. The U.K. considers it rare if it affects fewer than 50,000 U.K. citizens. China, who has the largest population of patients with rare diseases, is still deciding on their definition of what makes a rare disease ‘rare.’

“But maybe ‘rare’ isn’t so rare.”

1 in 20 people will be diagnosed with a rare disease at some point in their lives. 50% of those patients are children.

95% of these rare diseases still don’t have an approved treatment from the FDA.

Living with a Rare Disease

It’s easy for patients with rare diseases to feel alone or forgotten. Rare Disease Day is an outreach which lets patients know that the world cares and to bring light to the need for research to find treatment.

2019’s theme for Rare Disease Day is “Bridging Health and Social Care.” 8 in 10 patients struggle to perform daily tasks which creates a social impact for them as well as for their family and caregivers.

Bridging the Gap

CSOFT International is excited to show their support for this annual event through their continued efforts in creating a unified international research community. With the growing need for medical translations in research and patents, CSOFT bridges the gap of global healthcare through the use of translators who are in the target country and working in the medical field as doctors, researchers, or other experienced professionals.

These collaborations within international research advance the fight for a cure for the more than 7,000 rare diseases.

CSOFT has experience translating documents for approval by the FDA, MHRA, and the CFDA.

Watch the 2019 Rare Disease Day Video here

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