We are hiring! PaLaDIn beneficiary @jwmdrc are looking for a Technical Project Manager to develop innovative and validated tools for an integrated IT platform for PaLaDIn. For more information, click here: jobs.ncl.ac.uk/job/Newcastle-…

PaLaDIn beneficiaries @jwmdrc and @FSHDSociety are here at #WODC! Come and speak to Joanne at our poster to find out more about PaLaDIn and how you can help us design the Interactium data platform. If you are not at @orphan_drugs, you can still help here: bit.ly/4ew3VyO

Are you attending #WMS2024? Come and visit Becca Leary at poster 615P to hear all about PaLaDIn and how you can help us to design the PaLaDIn data platform - the Interactium. If you're not attending @WorldMuscleSoc congress, you can still help us here: bit.ly/4ew3VyO

Are you curious to learn more about @IHIEurope project PaLaDIn? Sign up to our newsletter to find out about our progress, future plans and to be the first to hear about opportunities to get involved! You can sign-up here: bit.ly/47Dahtt

We would like to introduce you to PaLaDIn beneficiary @FSHDSociety! The FSHD Society are the world’s largest research and patient advocacy organization dedicated to FSHD. Find out about their work and why they are involved in PaLaDIn here: bit.ly/4er3BB2

On World Duchenne Awareness Day #WDAD2024, PaLaDIn partners @DuchenneUK have released a new policy report. This report provides a complete picture of what it is like to live with DMD in the United Kingdom in 2024. View the report here: bit.ly/47kjlTG

PaLaDIn funder, @IHIEurope , will be hosting a webinar to introduce participants to practical tools and resources to help share data with confidence when working in collaborative consortia. See below for more information and to register:

Today is World FSHD day! PaLaDIn partner @FSHDSociety shares with us why this day is so important. Find out about the work PaLaDIn partners will do to achieve our goal of accelerating the development of treatments for all patients living with a NMD here: bit.ly/3UxsrZ5

Sign the #ECRD2024 Open Letter! ✍️ Join @eurordis and the many other signatories in addressing the future leaders of Europe and calling on them to address the urgent needs of the rare disease population. #ActRare2024 Read the full letter and sign now! go.eurordis.org/mm8ssb

👋 Vi presentiamo il nostro nuovo progetto @IHIEurope, @eu_paladin! L'obiettivo è quello di sviluppare una piattaforma che raccolga dati innovativi e reali RWD da persone affette da #malattierare.

👋 Say hello to our new IHI project, PaLaDIn! Their goal is to develop a platform that collects innovative, real-world data #RWD from people with #RareDiseases. 👉 More: ihi.europa.eu/news-events/ne… #IHITransformingHealth #EUResearch #HealthResearch

PaLaDIn partners will begin weekly design meetings to explore the user personas, confirm architecture choices and begin to bring the Interactium data platform vision to life. To keep up to date, sign up to our newsletter here: project-paladin.eu/news/

This exciting new role with @eu_paladin will involve developing and managing innovative and validated tools for an integrated IT platform that will collect real world, rare disease patient data to inform health decision making. To find out more: bit.ly/3UNVbwl

PaLaDIn partners bring together their individual expertise in NMDs to collaborate to achieve 7 ambitious goals. Our 4th goal is to co-create digital outcome measures using wearable devices and video that meet patient preferences and needs. For more info: bit.ly/3UxsrZ5

This exciting role is part of Patient Lifestyle and Disease Data Interactium (@eu_paladin) which is a European level project to use rare neuromuscular disease patient data to inform better health care decision making. For more information and to apply: bit.ly/3xUJBXl

Oggi continuano i lavori del progetto @eu_paladin grazie al F2F Design Workshop di @TREAT_NMD Paladin mira a trovare un approccio innovativo che integrerà e utilizzerà i dati sulle malattie neuromuscolari per prendere decisioni migliori nell'assistenza sanitaria.

Our Data Governance Manager, Nathan Bent is spearheading discussions on the design of the Interactium data platform with our @eu_paladin partners in Leiden today. We're thrilled to contribute to this planning for the future of PaLaDIn!

PaLaDIn partners met in Leiden yesterday to discuss the design of the Interactium data platform. The platform aims to provide insights to accelerate novel drug development, improve PROMS and inform health care decision-making in NMDs. Find out more: bit.ly/49o4V4O

Introducing TREAT-NMD! Another vital partner and scientific coordinator of project PaLaDIn. @TREAT_NMD is a global network of experts in the neuromuscular field. Find out more about why they are involved in PaLaDIn and what they hope to achieve: bit.ly/3U6pcr5

PaLaDIn partners bring together their individual expertise in NMDs to collaborate to achieve 7 ambitious goals. Our third goal is to maximise the utility, interoperability and reusability of data, that will feed into the PaLaDIn Interactium. For more info: bit.ly/3UxsrZ5