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Will Newman (@willgnew) profile picture

Will Newman

@willgnew

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

 Derbyshire
tinyurl.com/r7o54f4
Joined February 2009
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Photo by Will Newman (@willgnew)Photo by Will Newman (@willgnew)Photo by Will Newman (@willgnew)Photo by Will Newman (@willgnew)
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) profile pictureshaneir@shanemuk15 Sep 2024
#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…
Image from shaneir (@shanemuk)
Image from shaneir (@shanemuk)
Image from shaneir (@shanemuk)
Image from shaneir (@shanemuk)
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What an amazing experience
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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
Image from Cystinosis Ireland (@CystinosisIrl)
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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) profile pictureOrphanetJournal at BMC@ojrarediseases29 Feb 2024
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.c…

Navigating a Rare Diagnosis: Sources of Information and the Medical Professional’s Role

The unique bond shared by twins is a source of fascination to many but imagine how much more profound this bond would be if being a twin was the very thing that saved your life. This is the reality...

communities.springernature.com
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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
Image from MedicsforRareDisease (@MedicsForRare)
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Join us (virtually) for a Cystinosis Connect online meeting at 7.30pm on Thursday 29 February - Rare Disease Day! eventbrite.co.uk/e/cystinosi…
Image from CystinosisUK (@CystinosisUK)
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Will Newman retweeted
BSGM (@BritSocGenMed) profile picture
BSGM@BritSocGenMed20 Nov 2023
🍽️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?"
Image from BSGM (@BritSocGenMed)
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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
Image from Cystinosis CRN (@CystinosisCRN)
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"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-l…
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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
Image from Will Newman (@willgnew)
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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
Image from MedicsforRareDisease (@MedicsForRare)
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... and we can confirm there were Morris dancers who refused to be beaten by the weather and danced on
Underground Venues (@underthefringe) profile pictureUnderground Venues@underthefringe15 Jul 2023
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
Image from Underground Venues (@underthefringe)
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Phew! The #CRNnashville Conference agenda is now final. Lots of info on the event at bit.ly/3hsTpNy. #cystinosis #RareEvent #RareDisease
Image from Cystinosis CRN (@CystinosisCRN)
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