Recognising Rare Disease Day 2020 in London and Warsaw

This year Rare Disease Day fell on that very rare day, 29 February 2020. We enclose here two reports of NA Advocacy events, one at the Victoria and Albert Museum in London and the other at the Institute of Biochemistry and Biophysics of the Polish Academy of Sciences.

 

In London, to help raise awareness, the NA Advocacy held a special tour at the stunning Victoria and Albert Museum in London entitled "Red, Scarlet, Crimson: The History of Colour in Art," red being symbolic of acanthocytes. Anne Haworth, a lecturer at the V&A as well as other esteemed art museums and galleries including the British Museum, led the tour, which was attended by a group of over a dozen NA Advocacy supporters.

 

The talk was indeed fascinating as we travelled through various rooms of the museum including those devoted to China, Japan, the Islamic Middle East and Britain, learning of the decorative and historical use of red in jewels, stained glass, carpets, silk and other fabrics.

 

V&A London

 

From Poland, Teresa Zoldak writes to tell us that this year, she organised for the third time a Rare Disease Day in Warsaw at the Institute of Biochemistry and Biophysics, Polish Academy of Sciences. "Piotr Soczewka from my lab presented the talk entitled: 'Yeast in the fight against neurodegenerative diseases,'" Teresa said. "This year we had about 80 participants."

 

We wish to thank all those who took part in Rare Disease Day events for their generous support of the efforts to advance the cause for patients with neuroacanthocytosis.

 

Rare Disease Day Poland

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