The PaLaDIn General Assembly is taking place in Rome today and tomorrow. This is a great opportunity for all PaLaDIn beneficiaries to meet, discuss our progress and plan the next steps of the project. We are looking forward to some great discussions!
关于我们
The Patient Lifestyle and Disease Data Interactium (PaLaDIn), is an ambitious Innovative Health Initiative (IHI) funded initiative (with contribution from The FSHD Society, TREAT-NMD and UK Research and Innovation (UKRI). The project will drive innovative real world data collection from patients with rare neuromuscular diseases (NMDs).
- 网站
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https://www.project-paladin.eu/
PaLaDIn的外部链接
- 所属行业
- 研究服务
- 规模
- 11-50 人
- 类型
- 非营利机构
- 创立
- 2024
- 领域
- Data、Neuromuscular Disease、Rare Disease、PROMs、Digital Outcome Measures和Clinical Trials
动态
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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.?
Sta per concludersi una grande giornata di incontri ed attività per la comunità #Duchenne e #Becker all'Hotel Ergife. Il fitto programma di questo pomeriggio ha compreso ?due sessioni scientifiche, una dedicata alle strategie terapeutiche basate sull'exon skipping e una sui trial di terapia genica ?un momento dedicato alla Giornata delle Malattie Rare con UNIAMO Federazione Italiana Malattie Rare e Associazione Altrodomani ?una tavola rotonda sui #sibling nella quale si sono integrate le voci degli esperti e della comunità ?la presentazione del progetto europeo PaLaDIn ?una panoramica sul nuovissimo sito di Parent Project. Ma non solo: in parallelo, chi lo desiderava ha potuto unirsi ai gruppi di confronto su affettività e sessualità e per i sibling, e a due laboratori molto partecipati, uno di taglio cinematografico e uno in compagnia di nuovi amici a quattro zampe. Perché la Conferenza è così: un grande spazio e un tempo per incontrarsi, confrontarsi, aggiornarsi, ma anche per stare insieme e condividere esperienze!
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PaLaDIn转发了
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.
UK FSHD & Myotonic Dystrophy Patient Registries Manager at John Walton Muscular Dystrophy Research Centre, Newcastle University
The JWMDRC Patient Registries team have been participating in the TREAT-NMD Annual curators meeting in Milan this week. Our team were involved throughout, leading disease subgroup discussions, presenting our national and international neuromuscular registries and making new connections with registries from around the world. This meeting is always a fantastic opportunity to network with our global registry network colleagues old and new, and this year we were joined by our newest team members, Data Coordinators Lucy Hickson and Aleksander Carver. They represented our team brilliantly, learned more about the global registries network and met the rest of the TGDOC family. A successful and productive trip all round! Sam McDonald, Julie Bohill, John Walton Muscular Dystrophy Research Centre @ Newcastle University
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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
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PaLaDIn转发了
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
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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
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PaLaDIn转发了
?? 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
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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
On Rare Disease Day 2025, a message from our founders, Emily and Alex
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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
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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: