Will Newman

3K posts

Will Newman

@willgnew

ex-librarian, footballer, reader, morris dancer, papercrafter. Cystinosis campaigner for 'Ellie in my Head' https://t.co/d5eZwcmDej & chair @cystinosisuk

Derbyshire Katılım Şubat 2009

487 Takip Edilen201 Takipçiler

Will Newman retweetledi

Genetic Alliance UK@GeneticAll_UK·17 Eyl

Around 100 #genetic professionals from across the UK and Ireland were out on Sunday cycling to raise awareness and fundraise for @SWAN_UK and @Unique_charity. We love seeing all the amazing photo's! You can still show support via their fundraising link: givewheel.com/fundraising/21…

shaneir@shanemuk

#Ride4Rare a great success across UK & Ireland - we had a wonderful day cycling along the Boyne Valley @DiscoverBoyneV Greenway from Kingscourt to Navan - highly recommended! You can support our fundrasing for #RareDisease here: givewheel.com/fundraising/21…

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Will Newman@willgnew·18 Eyl

What an amazing experience

Dr Rachel Waller@Rwaller1988

A fantastic PPIE event and tour around the GTIMC facility at @sheffielduni last week. Great to see the translational work of gene therapy being developed and eventually manufactured here in Sheffield for use in patients @AAtmps #ARDAT .

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Will Newman retweetledi

Cystinosis Ireland@CystinosisIrl·8 May

We have one, very simple ask this Cystinosis Awareness Day. Help us to raise awareness of cystinosis by retweeting one of our tweets. Thank you 💛 #cystinosis #May7th #cystinosisawarenessday

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Will Newman@willgnew·1 Mar

So privileged to be part of this scheme to share real life experiences of living with a rare condition with medics who really want to make a difference. @M4RareDiseases @RareBeacon @CystinosisUK

OrphanetJournal at BMC@ojrarediseases

Discover insights from Oreoluwatoni Oduwole, runner-up of the @RDStudentVoice Contest 2023, on the evolving role of doctors in rare disease patient care and the importance of reliable online resources and ongoing education for doctors and patients alike. communities.springernature.com/posts/navigati…

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Will Newman retweetledi

MedicsforRareDisease@MedicsForRare·1 Şub

Congratulations to the winner and runners-up for the Student Voice Prize 2023! 🏆 Look out for the winning essay and runners-up blogs which will be available to read on #RareDiseaseDay 📷 @RDStudentVoice @RareBeacon #SVP23

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Will Newman retweetledi

CystinosisUK@CystinosisUK·1 Şub

Join us (virtually) for a Cystinosis Connect online meeting at 7.30pm on Thursday 29 February - Rare Disease Day! eventbrite.co.uk/e/cystinosis-c…

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Will Newman@willgnew·6 Oca

@drphilhammond @BBCRadio4 @doctor_oxford @ClareGerada @doctor_benji @Johnrashton47 @BBCSounds Really enjoyed listening to the whole series - such an insight via individual stories. Hope you get to do another series and a plea to get someone talking about #raredisease #rarecondition

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Dr Phil Hammond 💙@drphilhammond·15 Kas

Really enjoyed recording Doctor Doctor for @BBCRadio4. I gently dissect the life of another doctor to reveal their secrets & stories. Thanks @doctor_oxford @ClareGerada @doctor_benji @Johnrashton47 et al. Starts Dec 5 & on @BBCSounds. Artwork makes me look like the new Dr Who

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Will Newman retweetledi

BSGM@BritSocGenMed·20 Kas

🍽️Lunch & learn - Wednesday 12:30 ⚖️UK Citizens Jury on Genome Editing "Are there any circumstances under which a UK Government should consider changing the law to allow intentional genome editing of human embryos for serious genetic conditions?"

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Will Newman retweetledi

Cystinosis CRN@CystinosisCRN·10 Eki

Friendly reminder: breathe deeply Doing so for only a few minutes can clear your thoughts while calming your body. If you or someone you care about needs help, please reach out. #WorldMentalHealthDay #RareDisease #cystinosis

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Will Newman retweetledi

Human Library Org@TheHumanLibrary·20 Eyl

"It amazes me how people relate to you when you share your story, and how people are so kind towards you when they understand you more. We need more of this everywhere and more often.” #HumanLibrary #UnjudgeSomeone #Madagascar humanlibrary.org/the-human-libr…

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Will Newman@willgnew·23 Ağu

SAVE THE DATE The 2024 CNE International Cystinosis Conference will be hosted by @CystinosisUK in Manchester, England. Scientific meeting on 25th July followed by family meeting on 26th and 27th July. cystinosis-europe.eu

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Will Newman retweetledi

MedicsforRareDisease@MedicsForRare·22 Ağu

70% of rare diseases show their first signs in childhood but take an average of five years to diagnose. 🦓 Help us drive an attitude change towards rare diseases! If you would like to support the charity visit the link below. ❤️#DareToThinkRare m4rd.org

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Will Newman@willgnew·16 Tem

... and we can confirm there were Morris dancers who refused to be beaten by the weather and danced on

Underground Venues@underthefringe

Can confirm it is actually hailing in Buxton this morning ⚡🌨️ But the show will go on! We've got kids shows, comedy and music from 1pm-11pm. underthefringe.com

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Keşfet

@SWAN_UK @Unique_charity @RareBeacon @CystinosisUK @RDStudentVoice @drphilhammond @BBCRadio4 @doctor_oxford