jayrdi

📢 Registration Open: TREAT-NMD Myotonic Dystrophy Type 1 (DM1) Expert Masterclass Registrations are now open for our virtual DM1 Expert Masterclass on 16th January 2025, chaired by Nicholas Johnson and Benedikt Schoser. This event is designed for healthcare providers involved in diagnosing and managing DM1. Gain the latest insights on diagnostic pathways, standards of care, and emerging therapies, while engaging with experts, patients, and peers to enhance DM1 care. Register now to secure your place by filling out the registration form here > forms.monday.com/forms/f76daef4… #TREATNMD #DM1Masterclass #HealthcareEducation

@XboxSupport This must be either a hack or a change you made which broke it. Either way, if we are forced to be online to play games, you can't let this happen. It's now been over four hours with no explanation. That much time without a service I'm paying premium for, I expect compensation

Investigation continues into issues impacting users ability to sign in to Xbox Live and services. Thank you for your patience while our engineers work. Updates here and on Xbox.com/status

We are looking for a talented and motivated individual to join an international, multidisciplinary team working in the area of translational research for neuromuscular diseases. You will play a key role managing the SMA Care UK project. Find out more: bit.ly/3K8mE5G

We have an exciting role for a dynamic bioinformatician to analyse extensive omic datasets generated from muscle biopsies of patients affected by muscular dystrophies, to identify new disease mechanisms and biomarkers. For more details & to apply: bit.ly/3USPA7W

@NCL_RareDisease @RareDiseasesEU Nice shirt!

Our #Newcastle Centre for #RareDisease is working towards a better future for people living with rare conditions, in which, just as #RareDiseases aren't actually all that rare, treatments aren't either #RareDiseaseDay2024 @RareDiseasesEU

Members of our #Newcastle Centre for #RareDisease are participating today to the excellent #GeneticsMatters event, opening research & science to the public! @KasiaPirog1 @NHIPartners @NIHRNewcBRC @derm_scientist @johnasayer

The @Discovery_Mus is a great space for bringing research & developments in #raredisease closer to patients and public! Thanks @KasiaPirog1 for organising this as always! Our @NCL_RareDisease is proud to support this!

@jayrdi might need to reboot your console

Microsoft has added a Cyberpunk 2077 Xbox Dynamic Background for Xbox Series S / X owners

Join online the EJP RD - EFPIA Webinar on "Real-World Data, Machine Learning, and Deep Analytics in Rare Diseases." 🗓️ Jan 26, 2024 👥Featuring insights from industry expert Marc Van Dijk and EMA's Luis Pinheiro. ℹ️ejprarediseases.org/event/training…

Fantastic news! A groundbreaking moment for the Duchenne community—the first rare disease officially acknowledged with a UN Awareness Day. We would love to see more muscle wasting and weakening conditions recognised on their calendar. #Duchenne #UNAwarenessDay

🌟 Dive into the report for The 1st Argonaute Syndrome Science & Family conference! 🧬🤝 This networking event supported by @EJPRareDiseases's NSS, aimed to enhance knowledge exchange among patient families, researchers, and clinicians. Read the report: ejprarediseases.org/the-1st-argona…

This team from @LUMC_Leiden had a valuable experience at the MYO-MRI+ conference in Berlin past week. They shared their findings on quantitative MR assessments in #duchenne for the upper- and lower limb and effect of #corticosteroids on the #brain. Many thanks to the organization

@querques2000 You don't get used to it, I'm afraid! 😂

Dr Anne-Marie Childs is showing the importance of sleep studies to inform intervention in respiratory care. Work from the DMD-Care UK respiratory working group accepted for publication in Thorax will be available as open access soon @DuchenneUK @DuchenneRF @alljoinjack #adconf23

@PeterOvo5 Rouge city? 😂 Is it set in France? Le Robocop

Today, we announced topline results from EMBARK, a double-blind placebo-controlled, Phase 3 clinical study of our gene therapy in patients with Duchenne muscular dystrophy.

📣 Exciting News! Applications for Duchenne Patient Academy 2023 are now open Join us in Athens from Nov 30 to Dec 2 for immersive training for DMD/BMD patient advocates. Enhance your advocacy skills, and gain invaluable insights. → Apply now worldduchenne.org/news/applicati… #DPA2023

Starting today and running through December 2nd, mentors and educators specializing in the field will be accessible online to address your inquiries and provide guidance throughout your participation in the @EJPRareDiseases online course. Join the course! futurelearn.com/courses/introd…