Supporting change for the future of people affected by @acrodysostosis #raredisease #rarediseasecommunity Wife and Mum x 2
London
Joined January 2014
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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…lnkd.in/e5ZPQXqn
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
chuffed.org/fundraiser/acrod…
#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.
ALT Lily's gorgeous small hands Acrodysostosis. Www.acrodysostosis.com
ALT Lily acrodysostosis. Www.acrodysostosis.com
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. emea.illumina.com/company/ne…
#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: emea.illumina.com/company/ne…
Nina Knight @ Acrodysostsosis Support and Research retweeted
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. ✊ england.nhs.uk/2020/03/your-…
ALT ‘A single action from one person can be the difference between life and death for another, and simple acts of kindness are going to make all the difference in keeping some of the most vulnerable people well and out of hospital.’ — Dr Nikki Kanani
We were on the radio. Thank you Giles Brown and @TalkRadioEurope for the opportunity to raise awareness for rare disease and Acrodysostosis.com. thank you @findacure_fdn for your support you got a mention from me on this radio show this morning. @acrodysostosis
On Let's Talk from 10.00 AM CET @marbellagiles will be chatting to James Montague (@JamesPiotr), Nina Knight from @acrodysostosis and @NicholasMilton
Nina Knight @ Acrodysostsosis Support and Research retweeted
This fabulous film about nursing in the community has now had more than 28K views. youtube.com/watch?v=YcGKJSFW…
Pls retweet. It is truly informative & moving @CNOEngland @MRadford_HEECN @Liz_HEE @NGSOpenGardens @GeorgePlumptre @ptsafetylearn @PatientsAssoc @johnunsworth10 @TheQNI
Nina Knight @ Acrodysostsosis Support and Research retweeted
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 🙌🏼
ALT Photo of Dan Lewi behind a lectern
ALT Photo of Will Evans behind a lectern
ALT Photo shows Taylor Fields behind the lectern presenting. To the side are Dan and Will who are sat at the table listening.
Nina Knight @ Acrodysostsosis Support and Research retweeted
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
ALT A selfie of Rick, Mary Rose, Laura and Philippa from Findacure
#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 jeansforgenesday.org/sign-up
Nina Knight @ Acrodysostsosis Support and Research retweeted
Tragic: Pioneering geneticist killed in crash while cycling in London standard.co.uk/news/london/c…
I attended this event on behalf of @acrodysostosis . So helpful and thank you for inviting me #KudosHeakthDay and @findacure_fdn
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 retweeted
@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
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 xitter.cf/LizzieCoker/status/101…
Lastly, the winning #BioDataHack @targetvalidate entry was inspired by yesterday’s motivational talk from @GemmaChand @camraredisease!
Nina Knight @ Acrodysostsosis Support and Research retweeted
Did you know that NORD hosts educational information about specific #RareDiseases on their website? Find them all here: ow.ly/gGqr30kMaPr @RareDiseases
Thank you @camraredisease, @RareRevolutionM, and @wellcomegenome for making it possible for us to attend this incredible event. we represent @acrodysostosis families. xitter.cf/camraredisease/status/…
Great hackathon challenge @Microsoft “how can we design a clinical trial around the patients home? #patientcentric #BioDataHack @wellcomegenome what patient considerations are there?
I saw this talk and it blow me away. What an incredibly inspiring young women! #acrodysostosis xitter.cf/RareRevolutionM/status…
Another fantastic talk from @NatashaCoatesGB on her experiences of living with Mast Cell Activation Disorder.
#acrodysostosis. Here is a link to our face book group facebook.com/groups/Acrodyso…. This is largest community of people with and effected by Acrodysostosis in the world.
