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Emily Dourish @emilydourish.bsky.social · 4h

The NHS covered her treatment with Soliris, one of the priciest drugs in existence. The lesson of this thread is if you or someone you know is tired and ghostly pale (and esp if dark red wee), ask your GP for an FBC and mention PNH and AA. Please share - it's rare but potentially devastating. 3/3

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Emily Dourish @emilydourish.bsky.social · 4h

We were very fortunate that then-9yo was diagnosed at the first set of tests in which she was found to have blood that was essentially water. That explained the tiredness, bruising, nosebleeds, and paleness that had come on so gradually so that we hadn't spotted it. 2/3

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Emily Dourish @emilydourish.bsky.social · 4h

PNH is a super-rare condition where the immune system goes haywire and munches up your red blood cells. Telltale symptom is dark red wee (although not all patients have this). It's often found alongside aplastic anaemia in which the bone marrow forgets how to produce blood cells of all types. 1/3

PNH Global Alliance @pnhglobalalliance.bsky.social · 6h

🌟 𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? Today is Global PNH Awareness Day!
Let’s raise awareness for paroxysmal nocturnal hemoglobinuria (PNH), support patients, and action treatment access for all! 💙🩸

#PNHAwareness2025 #PNH #RareDisease #PatientSupport"

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Florie @floriemarie.fr · 1d

Allez, on répète après moi :

ChatGPT 👏👏
n’est pas 👏👏
un moteur 👏👏
de recherche 👏👏

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Christiaan Monden @cmonden.bsky.social · 2d

Great (paid) PhD opportunity. Excellent environment, conditions, and supervisors. And a topic close to my heart. (Selfish reason for promoting this: I fear there won't be enough concerts for retired me to go to. Geen dag zonder Bach.) vacatures.knaw.nl/job/The-Hagu...

PhD position "Is the audience for classical music concerts fading out?"

vacatures.knaw.nl

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Emily Dourish @emilydourish.bsky.social · 1d

Want your own piece of beautiful hand carving *and* to support a good cause? Here's your chance!

Poor Frank Raw @poorfrankraw.co.uk · 1d

DUTCH AUCTION in support of salivaryglandcancer.uk

In my shop, this piece is priced at £165. At noon every day (BST) the price drops by £10, until it sells.

First DM gets it. UK shipping only.

Half of what you pay will go to SGC UK.

Please repost for widest coverage. Thank you :)

Hand carved #lettering on Hopton Wood limestone. I AM WHAT I AM.

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De Profundis @dpchoir.bsky.social · 1d

Rather nice to be featured in The Times cryptic. (2,9)

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joshuatj @joshuatj.digipres.club.ap.brid.gy · 2d

Woohoo! Great #digipres story @makethecatwise
https://www.bbc.com/future/article/20251009-rescuing-knowledge-trapped-on-old-floppy-disks

A digital dark age? The people rescuing forgotten knowledge trapped on old floppy disks

From lectures by Stephen Hawking to the letters of British politician Neil Kinnock – it's a race against time to save the historical treasures locked away on old floppy disks.

www.bbc.com

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Emily Dourish @emilydourish.bsky.social · 1d

"people-cushion" 💕

Mari Takayanagi @satisfactory20.bsky.social · 1d

I was really delighted to speak about #NecessaryWomen to an attentive and enthusiastic audience at @gladlib.bsky.social yesterday! Today it was full tilt research looking at as many files as I could during my last day of archives consultation. Phew!

Chapel, a bright modern room with white walls and wooden chairs, images of bookshelves at front and a presentation screen, with audience gathering for talk

Library laminated sign ‘These cushions are for the books! Please do not sit on them. Please ask at the enquiry deal if you would like a people-cushion for your chair’

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Emily Dourish @emilydourish.bsky.social · 1d

Things getting extreme on the local Next door email roundup.

Screen shot of an email. The text has been truncated such that it appears to read "Does anybody know of a charity that could accept an immediate frozen cat"

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Emily Dourish @emilydourish.bsky.social · 2d

Here's my side hustle as hand model.

Cambridge University Library @theul.bsky.social · 2d

It's #BannedBooksWeek. Over the centuries, our duty to preserve the nation’s literary output has led us to collect works of all kinds, regardless of their content.

Lady Chatterley’s Lover and Ulysses both entered our collections years before they were widely available.

A 1920s copy of James Joyce's Ulysses in a bright blue paper binding. It is held in a person's hands. We see a library setting in the background.

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Keith W. Dickinson @keithwdickinson.bsky.social · 4d

Today is a day when arts degrees are worthless, but the product of those degrees is so valuable it would kill an entire industry if they were made to pay for it.

The Verge @theverge.com · May 26

Nick Clegg says asking artists for use permission would ‘kill’ the AI industry

Paul McCartne, Elton John and others signed an open letter.

buff.ly

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Emily Dourish @emilydourish.bsky.social · 4d

If anyone is looking for a Christmas present idea @markdourish.bsky.social cough> this looks splendid.

Emma Thane of Cawdor @redwellyfeats.bsky.social · 4d

It's in this lovely pop up book about frogs. I hadn't heard of it either until I read this.

A beautiful pop up book about frogs, tied in a pretty pink ribbon.

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Emily Dourish @emilydourish.bsky.social · 5d

It is truly amazing how quickly transfusions sort the symptoms of anaemia. When 9yo had her first units of blood way back <waves hand> the colour in her cheeks showed just how used we had got over time to her ghostly appearance. Hope you have a similarly miraculous improvement.

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Dr Francis Young @drfrancisyoung.bsky.social · 5d

“Both discoveries show the crucial role of county council archives and their staff in preserving this musical heritage.”

Dr Ian McCormick @wokestudies.bsky.social · 5d

GOOD NEWS !
"A team of musicologists has unearthed the printed score of a previously unknown Purcell song, as well as the original manuscript for various keyboard compositions."
#baroque #music
www.theguardian.com/music/2025/o...

‘Almost unheard of’: experts find more music by English composer Henry Purcell

Printed score and keyboard manuscript by Purcell, who died in 1695, unearthed in Worcestershire and Norfolk

www.theguardian.com

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Emily Dourish @emilydourish.bsky.social · 5d

Shimmering clouds above @theul.bsky.social at home time today.

A tall square tower above a large red brick building. The sky is blue and there are rippled white clouds.

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Emily Dourish @emilydourish.bsky.social · 6d

If there was a word I would absolutely *not* use for the @theul.bsky.social catalogues, it would be SMOL.

Green hardback volumes of a library catalogue. One volume contains authors from SMOL to SNH, although the last author in the volume is actually Snezhnitsky.

A beautiful long 1930s room with ornamented windows through which the autumn light is shining onto some of the hundreds of green volumes that make up the old catalogue of Cambridge University Library.

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R.L. Stine Cold Steve Austin @bolt451.bsky.social · 9d

Cant even have men Archbishops any more

Because of Woking

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Deanna Kreisel 🌱 @doctorwaffle.substack.com · 9d

In honor of National Poetry Day, the greatest parody rewrite of all time:

Screen cap of parodic version of William Blake's "The Tyger" that begins:
Tyger! Tyger! Burning bright
(Not sure if I spelled that right)
What immortal hand or eye
Could fashion such a stripy guy?
What the hammer that hath hewn it
Into such a chonky unit?
Did who made the lamb make thee,
Or an external franchisee?

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Emily Dourish @emilydourish.bsky.social · 9d

When you see something very cool in a bookseller's catalogue, but by the time you reply to the email *6 other people* have already enquired about it.

a blue cartoon character is crying with tears falling out of his eyes

Alt: A very sad blue animated character is sobbing copiously

media.tenor.com

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In Quires and Places where they meme @quiresandplaces.com · 10d

That's real Britain.

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Popehat Agitates And Irritates @kenwhite.bsky.social · 10d

Every few months now I re-read this "Who Goes Nazi?" piece from 1941 and am blown away by how it captures the people we are dealing with 80 years later.

harpers.org/archive/1941...

Who Goes Nazi?, by Dorothy Thompson

harpers.org

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Emily Dourish @emilydourish.bsky.social · 10d

In the reading room today: the absolutely wonderful Light Car magazine from 1934. #TrafficLight #Aeroplane #GuildfordBypass @theulspeccoll.bsky.social L429:8.b.20

A beautiful 1930s car next to a small aeroplane, in black and white. "The light car of today and its equivalent in the realm of travel by air."

"The robot traffic controller" also known as a traffic light. Queued up are two light cars, a cyclist, a van and a double decker bus, all mid 1930s models.

"The modern light car really is a go-anywhere vehicle!" A 1930s three-wheeler driving through a river.

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Emily Dourish @emilydourish.bsky.social · 11d

@camhistory.bsky.social the Stirling building standing dignified behind its hoardings in yesterday's early evening light.

A tall glass-covered 1960s building with wooden hoardings enclosing the lower levels. The late evening light reflects from the glass against a pale sky.

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Emily Dourish @emilydourish.bsky.social · 12d

I spent the first couple of hours at work (some years ago I hasten to add) with a kids' dressing-up monkey tail velcroed to the back of my skirt. Not sure why it took so long until someone gently asked "Are you aware...?"
THANKS KIDS. THANKS A LOT.

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