Rudy study

NIHR funded study of rare diseases. Rudy aims to transform clinical care for participants through patient driven research

[Rudy study @RudyStudy]

https://t.co/sUww6b4drN

Thank you to all our new participants who have signed up to help RUDY with research into rare diseases... please remember to complete your questionnaires in the to-do page to tell us how you are feeling. #RareDisease #rudystudy

[Rafael Pinedo @RafaPinedo_HE]

Read our latest #research on physical function of adults with #OsteogenesisImprefecta participating in the @RudyStudy. @JavaidKassim @CSMOxford @ndorms

https://t.co/AYrqIlTyIj

[Rudy study @RudyStudy]

RUDY is very proud of this work! #rudyjapan #NDORMS https://t.co/sJZW6cnQq7

[Myeloma UK @MyelomaUK]

1/2 The @PrepareStudy aims to understand the risk #COVID19 poses for patients using info from participants from the @RudyStudy  

This will help healthcare professionals and patients work together to balance potential risk of COVID-19 and #bloodcancer management appropriately.

[Rudy study @RudyStudy]

RUDY is working with The PREPARE project which aims to understand the risk COVID-19 poses for patients with blood cancers @MyelomaUK @RDMOxford
@PrepareStudy
https://t.co/ryCoEouAn9

[Penny Clapcott @PennyClapcott]

Great meeting with @RudyStudy tonight making final changes to #covid questionnaire to soon be rolled out to understand the impact covid has had on #RareDiseases

[Rudy study @RudyStudy]

Several researchers have got in touch to find out if we can use your responses within Rudy to measure how COVID19 has affected people with rare diseases and use this to plan care. So, if you are due a questionnaire please do complete it on "About me page"
Stay safe
RUDY team

[Rudy study @RudyStudy]

Dear Rudy Participant,
We want to reach out to you during these challenging times with the pandemic.
Please follow NHS advice online. If you need help please contact your usual NHS services.
We want to reassure you we will keep RUDY going through the pandemic as much as we can.

[FOP Friends @FOPFriends]

#RareIsStrong. The people living with FOP, their families and carers are perhaps some of the strongest people you will meet. #CureFOP #FOPFriends #RareDiseaseDay #ShareYourRare

[Soft Bones HPP @SoftBonesHPP]

Tomorrow is #rarediseaseday and so we are sharing some facts about HPP. We may be rare but together we are #HPPstrong #RDD2020

[Rudy study @RudyStudy]

Dear Rudy participants
We have noticed that a recent University security upgrade has meant some emails to RUDY using the website are not getting through. If you have a query or problem please email [email protected] while we wait to get it fixed. @RudyStudy

[Rudy study @RudyStudy]

Excellent news - One of @RUDY participants is a "changemaker" within #IAmNumber17 This is a campaign to help the voices of those with rare diseases be heard, brought to you by Takeda, together with 13 rare disease patient groups from across the UK #raredisease #RUDYstudy

[Rudy study @RudyStudy]

Happy Belated Birthday to this lovely lady who sometimes comes along to @RudyStudy meetings! @PennyClapcott

[Penny Clapcott @PennyClapcott]

Happy 4th birthday to my partner in crime @canine_partners

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

*Diary marker *
29th February = #RareDiseaseDay
Supporting #RareDisease on a #rare day (and every day)

[ResearchKGH @ResearchKgh]

🙌NEW STUDY: @KettGeneral has started a new study, @RudyStudy recruiting patients and relatives to understand more about all aspects of rare diseases #rudystudy #NHSresearch #cancerresearch
https://t.co/aF1pZz9Cpv

[NELFT Research & Development @NELFTResearch]

Excited that NELFT is now a site for @RudyStudy - aiming to transform clinical care for those with rare diseases

[Rudy study @RudyStudy]

“A new study from the Rudy team shows that XLH may shorten life expectancy by up to 8 years and highlights the need to get more information about the physical and mental health of people with XLH” - M Kassim Javaid

Link to paper: https://t.co/6yARBp4PEF

[Penny Clapcott @PennyClapcott]

Brilliant weekend in Amsterdam, part conference, part leisure (getting very lost and getting on wrong trains). Amazing to be in a building full of some the best Dr's, researchers and awesome OI'ers around the world. #QoL4OI @BrittleBoneUK @Care4BB @RudyStudy @OIFE_OI

[Kassim Javaid @KassimJavaid]

The Netherlands leads the world for resilience. Need to build this for rare disease patients wherever they live and start measuring it in our research like ⁦@RudyStudy⁩ #qol4oi2019

[Kassim Javaid @KassimJavaid]

Panelist’s discuss challenges of internationalising academics working with industry #wodc2019 ⁦@orphan_drugs⁩ especially for neglected diseases Long way to go but we need to do this for our patients Go team science, goal is not the nature paper but getting into the clinic

[Kassim Javaid @KassimJavaid]

Forty percent of rare disease patients receive the wrong diagnosis - vision is to put patient at forefront of diagnostic journey using digital tools, virtual clinics to get the final diagnosis #WODC2019 ⁦@orphan_drugs⁩. Time to leap frog with digital solutions!