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