Our popular Genetics Matters event is back!
Save the date and come see us on Saturday the 29th of February for a fun afternoon filled with science and cake, as part of the International Rare Disease Day. Please email katarzyna.pirog@ncl.ac.uk if you’d like to take part and present and please spread the news amongst your friends and colleagues, the more the merrier!
From the International Rare Disease Day website:
“When the challenge of raising awareness for people affected by a rare disease still looms. On Rare Disease Day we must re-double our efforts. Re-think, re-envision, reimagine. Reframe what it means to be ‘rare’. In fact – rare isn’t scarce, rare isn’t infrequent, rare isn’t remote. Rare is not as rare as you think. The statistics speak for themselves. There are more than 300 million patients, each supported by family, friends and a team of carers, that make up the rare disease community worldwide. Over 6,000 different diseases. Collectively, they make up the third largest country in the world. Rare is many. Rare is strong. Rare is proud. The likely truth is that you know one of the 1 in 20 people affected by a rare disease. We need society to understand that millions of people living with a rare disease around the world face inequitable access to diagnosis, treatment and care. It’s time to take action for people living with a rare disease to have equal opportunities to realise their potential. [..] We need everyone to get involved and join the movement to reframe rare!”
