Nina Knight @ Acrodysostsosis Support and Research

Supporting change for the future of people affected by @acrodysostosis #raredisease #rarediseasecommunity
Wife and Mum x 2

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

I’m happy to share that I have started a new position as Development & Operations Officer at Aspire Biosciences! I will still be working hard with Acrodysostosis Support and Research, on our mission to improve the lives of people effected by Acrodysostosi…https://t.co/ahdfhgsxyq

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

Just posted a photo https://t.co/bLrS9tg0gZ

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

Our charity set up by parents have partnered with GOSH charity to find and fund a research project into my daughter's rare disease acrodysostosis. Pls help by donating
and retweeting #acrodysostosis #GivingTuesday2020 @findacure_fdn @RareRevolutionM
https://t.co/HK6hQOO9np

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

Love this

[Scott Bryan @scottygb]

ABSOLUTE SCENES ON THE BBC NEWS CHANNEL

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

#ECRD2020 Thank you. My family and I are enjoying being a part of it. Both our children have been able to attend this virtual conference. The @acrodysostosis community appreciate the support we get from #EURORDIS.

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

thank you @shirlenebadger & @illumina for making this beautiful video for rare diseases like @acrodysostosis. #COVID19 is impacting all our lives and the most vulnerable in our society and affected the most. https://t.co/pCU26IeCAL

[Shirlene Badger @shirlenebadger]

#COVID19 is impacting all of our lives, but for millions of individuals and families who live with rare disease, this time presents additional challenges. #illuminaproud to send this #MessageofHope
See the full video here: https://t.co/Dj4KZ4iBFI

[NHS England @NHSEngland]

If you're fit and healthy, #YourNHSNeedsYou. Working with @GoodSamApp, we've launched NHS Volunteer Responders which means you can now help the most vulnerable people in your community who need to stay home because of #coronavirus. ✊ https://t.co/YFa30ZpklS

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

We were on the radio. Thank you Giles Brown and @TalkRadioEurope for the opportunity to raise awareness for rare disease and https://t.co/whyAT2oFdL. thank you @findacure_fdn for your support you got a mention from me on this radio show this morning. @acrodysostosis

[TRE Talk Radio Europe @TRETalkRadio]

On Let's Talk from 10.00 AM CET @marbellagiles will be chatting to James Montague (@JamesPiotr), Nina Knight from @acrodysostosis and @NicholasMilton

[Dr Crystal Oldman CBE EdD RN RHV QN FRCN @CrystalOldman]

This fabulous film about nursing in the community has now had more than 28K views. https://t.co/aDno9NcsNI
Pls retweet. It is truly informative & moving @CNOEngland @MRadford_HEECN @Liz_HEE @NGSOpenGardens @GeorgePlumptre @ptsafetylearn @PatientsAssoc @johnunsworth10 @TheQNI

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

@acrodysostosis and our family would like to thank #findacure for helping us to raise awareness for our daughter Lily and the Acrodysostosis community. You are all amazing! #RareDiseaseDay #RareDisease

[Beacon for Rare Diseases @RareBeacon]

We couldn’t have said it better ourselves!

A fantastic example from Dan Lewi @Tay_Sachs, Will Evans @NiemannPickUK and Taylor Fields @IntraBio of #PatientGroup and industry collaboration, showing us how *every* voice in the #DrugDevelopment process is valuable 🙌🏼

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

@findacure_fdn @RickSThomp @thriftedphil @MRoseRoberts Amazing event #DrugRepurposing for #raredisease conference. Thank you @findacure_fdn Ordinary people doing Extraordinary things!! x

[Beacon for Rare Diseases @RareBeacon]

Huge thanks to everyone who joined us today for our seventh(!) #DrugRepurposing for #RareDiseases conference. What a fantastic day, and our biggest audience yet! Until next year 👋🏻 #DrugRepo

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

#Acrodysostosis are proud to be members of @GeneticDisordersUK Partnership Network. This #GivingTuesday why not pledge to hold a #JeansforGenes day in 2020 and help our community transform the lives of children with life-altering #geneticdisorders https://t.co/OBmIgTknv1

[Kudos Health @Kudos_Health]

Tragic: Pioneering geneticist killed in crash while cycling in London https://t.co/VUL0YgoMhO

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

I attended this event on behalf of @acrodysostosis . So helpful and thank you for inviting me #KudosHeakthDay and @findacure_fdn

[Kudos Health @Kudos_Health]

The #KudosHealthDay about social research and how to go about it went really well! Huge thanks to Rick and Libbie from Findacure @findacure_fdn, Lorna and Mitchell from Cello Health @cellohealth and Rezina @RezinaChowdhury for their support and guidance.

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

@findacure_fdn @RareRevolutionM @camraredisease Phil and @NinaKnight8 are @ the Wellcome Genome Campus for a Hackathon representing our daughter Lily and @acrodysostosis #support and #research. Great Event! xx

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

@findacure_fdn I am reading this at the moment very helpful. @acrodysostosis.

[Nina Knight @ Acrodysostsosis Support and Research @NinaKnight8]

what an absolute pleasure to meet @GemmaChand at the #BioDataHack event. what an inspirational woman! As a family effected by rare #RareDisease her talk resonated with us. And the winners of the @targetvalidate nailed it too! @acrodysostosis @camraredisease https://t.co/gvF8whRgZK

[Dr Elizabeth Coker @LizzieCoker]

Lastly, the winning #BioDataHack @targetvalidate entry was inspired by yesterday’s motivational talk from @GemmaChand @camraredisease!

[Beacon for Rare Diseases @RareBeacon]

Did you know that NORD hosts educational information about specific #RareDiseases on their website? Find them all here: https://t.co/g3TFey5J36 @RareDiseases