PaLaDIn

This weekend PaLaDIn scientific coordinator Parent Project aps held their annual International Conference for the Duchenne and Becker community. We were extremely grateful for the opportunity to join a workshop today on the importance of patient advocacy contribution in drug development and HTA and talk about how PaLaDIn plans to support patient centered decision making, through the development of PaLaDIn Interactium data platform.?

A wonderful Annual Curators meeting of the TREAT-NMD Global Registry Network in Milan with over 70 global attendees. Great discussions on impact, data quality, synthetic data use and PaLaDIn.

Marco Roos from PaLaDIn beneficiary Leiden University Medical Center will be presenting today at a Dutch National event for Rare Disease day, to an audience of patient representatives, care providers and researchers. Marco will be presenting about care pathways and patient journeys. Marco's presentation will focus on the importance of combining both the patient and data perspective and will highlight how we will adopt this approach in PaLaDIn. Find out more about the event here: https://lnkd.in/fSmAN2k

Today is Rare Disease Day! We hope you are inspired to share your story along with the FSHD Community and those with rare diseases all around the world. https://lnkd.in/gzAbzJUN ? Head to the link in our bio to visit our Rare Disease Day page. Download the images to share on your social media. https://lnkd.in/gB6EzbG ? Use the hashtags #RareDiseaseDay #FSHD and #CureFSHD in your stories and posts, and don't forget to tag us! ? Take this opportunity to share your FSHD experience with the world ?? #RareDiseaseDay2025 #CureFSHD #FacesOfFSHD #FSHD #RareDiseaseDay #RareWarrior #MuscularDystrophy #DisabilityAwareness #RareDisease

As part of Rare Disease Day events, PaLaDIn beneficiary Newcastle University will be hosting Genetics Matters. This event, taking place on Sunday, aims to connect with patients and the local community about the research into rare diseases that is happening at Newcastle University. Find out more here: https://lnkd.in/egJVvmvP

?? On #RareDiseaseDay, meet the IMI and IHI projects striving to improve the lives of people living with #RareDiseases by boosting the development of new treatments, easing the set-up of #ClinicalTrials, and facilitating the gathering of real world data. ?? Find out more about the projects: https://europa.eu/!yKPm6p #IHITransformingHealth #HorizonEU Screen4Care PaLaDIn RealiseD_ihi COCIR EFPIA - European Federation of Pharmaceutical Industries and Associations EuropaBio - the European Association for Bioindustries MedTech Europe Vaccines Europe EU Science, Research and Innovation

On Rare Disease Day, PaLaDIn beneficiary Duchenne UK are raising awareness of their campaign #TimeIsMuscle, which aims to bring timely access to treatments for patients with Duchenne Muscular Dystrophy (DMD). To find out more, click here: https://lnkd.in/e8dtUKyU

Today we are joining everyone from across the rare disease community to raise awareness about Rare Disease Day! PaLaDIn is dedicated to promoting equity for all individuals living with rare diseases. Our mission is to develop tools and resources that enhance healthcare decision-making and foster the creation of effective treatments. Join us throughout Rare Disease Day as we share what PaLaDIn beneficiaries are doing to raise awareness and to support those living with a rare disease.? Find out more about Rare Disease day here: https://lnkd.in/gk6hbAF

We are very pleased to announce the appointments of Prof. Volker Straub as the PaLaDIn Clinical Lead, along with Prof. Benedikt Schoser appointed as the Deputy Clinical Lead. Prof. Straub and Prof. Schoser will advise on the strategic direction of the PaLaDIn consortium and support the realisation of the project’s vision. Find out more in our newsletter:

Our first PaLaDIn newsletter is out now! In this addition, we tell you more about the Innovative Health Initiative (IHI) funded project PaLaDIn and the development of our data platform the Interactium?. You can also read about the appointment of the project's new clinical leads. You can read the newsletter here and sign up to receive future editions: https://lnkd.in/ee7qJyu8