Pharmaceutical Market Europe - March 2021
Marking Rare Disease Day
Rare Disease Day 2021, that fell on 28 February this year, aims to raise awareness among the general public and decision-makers about rare diseases and the impact these conditions have on patients’ lives.
According to Rare Disease UK, one in 17 people will be affected by a rare disease at some point during their lifetime, with 3.5 million people in the UK and 30 million people across Europe living with a rare disease.
In 2021, Rare Disease Day focused on the global rare diseases community by spotlighting six continents, six portraits, six heroes, six lives, featuring individuals living with a different rare disease and facing similar challenges.
LOOSE ENDS 3/12: Spencer Reynolds - centraljersey com
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How Covid-19 is changing rare diseases research
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March 8, 2021 at 2:30pm
Arlington’s Ellie McGinn and her family recently raised nearly half a million dollars to fund research into Ellie’s rare degenerative brain and spinal cord disease.
Ellie, 12, has lived with LBSL (leukoencephalopathy with brain stem and spinal cord involvement and lactate elevation) for the last 10 years. It affects fewer than 100 people worldwide and currently has no cure. Her family has been actively fundraising for a cure since 2013.
This year’s all-virtual efforts in honor of Rare Disease Day on Feb. 28 drew a total of $400,000 in donations from around the world. Last Wednesday, the McGinn family awarded the money to the Moser Center at the Kennedy Krieger Institute in Baltimore, which is currently developing and testing new drug therapies that could lead to a cure for LBSL.