Will Newman

ex-librarian, footballer, reader, morris dancer, papercrafter. Cystinosis campaigner for 'Ellie in my Head' & chair @cystinosisuk

[Genetic Alliance UK @GeneticAll_UK]

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:
https://t.co/28G2OOJob6

[Will Newman @willgnew]

What an amazing experience

[Cystinosis Ireland @CystinosisIrl]

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

[Will Newman @willgnew]

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. https://t.co/BElcb7yDcz

[MedicsforRareDisease @MedicsForRare]

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

[CystinosisUK @CystinosisUK]

Join us (virtually) for a Cystinosis Connect online meeting at 7.30pm on Thursday 29 February - Rare Disease Day!

https://t.co/WgzibgSOrQ

[Will Newman @willgnew]

@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

[BSGM @BritSocGenMed]

🍽️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?"

[Cystinosis CRN @CystinosisCRN]

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

[Human Library Org @TheHumanLibrary]

"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
https://t.co/SbeGYDH0DE

[Will Newman @willgnew]

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. https://t.co/6UOeNtepUn

[MedicsforRareDisease @MedicsForRare]

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
https://t.co/kOtyQOowVY

[Will Newman @willgnew]

... 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. https://t.co/ZTb0e66tzZ