News

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

Ionis treatment for Alexander disease granted orphan drug status from EMA

February 2020

Ionis Pharmaceuticals, Inc. (NASDAQ: IONS), the leader in RNA-targeted therapeutics, announced today that the European Medicines Agency (EMA) has granted orphan drug designation to ION373 for the treatment of people with Alexander disease, a severe, progressive and debilitating condition that can eventually result in death due to loss of control over autonomic functions like breathing. Infants and young children who develop the condition rarely survive beyond their teenage years or young adulthood.

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Britt Ekland – Alex TLC Patron

January 2020

A huge welcome to our new Patron, the incredible Britt Ekland “It’s a huge boost for us to have such a high profile celebrity coming on board to help raise awareness of leukodystrophy. We’re very much looking forward to working with Britt as our newest patron, and applaud her willingness to use her personal story in the fight to bring newborn screening for ALD to the UK.”Sara Hunt – CEO

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