I'm delighted to co-lead a dedicated work package on #PPI with Rare Diseases Ireland as part of the RDcat national consortium on #Rarediseases . currently collaborating with @EURORDIS on refining and validating #PREMs to enhance healthcare experiences for those living with rare diseases
📢We're very proud to be partnering with EURORDIS-Rare Diseases Europe on the upcoming ECRD on 15 & 16 May 2024, and it is fully hybrid for the first time!
💡This is an opportunity to shape goal-driven #RareDisease policies of the future!
🔗Register now! invt.io/1exb18c34xf
reps from Alliance for Regenerative Medicine (ARM), Italian Ministry of Health, EURORDIS-Rare Diseases Europe, Fondazione Telethon & Autolus holding a thoughtful but hard discussion on the need for innovative payment solutions to support & sustain patient access to cell & gene therapies #CGMed24
RDI delighted to partner in HealthResearchBoard €3million 3-year RDCat program to build #RareDisease research capacity in Ireland. We will collaborate with consortium members and @EURORDIS & ERICA putting patient voice at heart of research and development of healthcare systems
Excited to share patient leaders' collective work to catalyse the global patient movement towards inclusion in all health decision-making💪Professor Lara Bloom Brian O Mahony Derick Mitchell Yann Le Cam Jennifer Austin (she/her) Nicola Bedlington Stefan Gijssels Nicholas Brooke @NHcouncil IAPO #ODRD2024
We have a really exciting webinar coming up next month on #CareCoordination for #RareDisease ✨ An excellent line-up planned! All to be revealed during the week 🤫 Save the date! EURORDIS-Rare Diseases Europe Genetic Alliance UK 22Q11 Ireland Dr Suja Somanadhan Prof AJ McKnight ✨ Registration link to follow 🧬☔️
Commw Rare Diseases gap with NHS? Mail+ of Trinidad woman with rare mega skin tumours search for aid. Time4Change Ruth May 💙 Patricia Scotland KC Louie Horne B.E.M. 💙 Jeni Caguioa Daniel Pruce 🇬🇧 EURORDIS-Rare Diseases Europe Michèle Boccoz Chutintorn Sam Gongsakdi Teddy Locsin Jr. Wes Streeting MP Chi Onwurah 💙
Thanks to Rare Man for including me & Virginie Bros-Facer CEO EURORDIS-Rare Diseases Europe perspective on the #raredisease policy landscape in #Europe opportunities & challenges. Also the particular issues faced by women in accessing diagnosis & care.
📣 Good news!
In the today’s plenary vote, MEPs voted on reforms to the EU’s pharmaceutical legislation. We welcome the position adopted by European Parliament and hope the Council will take the opportunity to build on it going forward.
Read our full statement: go.eurordis.org/MsdxZ6
Iliana Ivanova European Parliament Erasmus+ Benjamin Dalle European Youth Forum Youth Partnership SALTO Participation & Information RC European Youth Event European Youth Parliament PiaAhrenkildeEU Belgian Presidency of the Council of the EU 2024 Margaritis Schinas It was great to listen to our Commissioner Iliana Ivanova in the Plenary this morning, while warming up for our session on rare diseases this afternoon! Irene Norstedt EURORDIS-Rare Diseases Europe Alba Parejo🍪 Mathieu Orphanides
Yann Le Cam EURORDIS-Rare Diseases Europe opens #RareDiseaseForum2024 reminding all why it’s crucial for #Europe to be a global #leader in #pharmaceutical #innovation and #orphanmedicinalproducts rather than hoping to be an importer of #innovation from the rest of the world. #closethegap EFPIA
Enfermedades Raras Unidad de Diagnóstico de Enfermedades Raras UNAM YellowBrickRoadProject Jennifer Bain MD/PhD (she/her/ella/Dr.) EURORDIS-Rare Diseases Europe NORD Asociación FOXP1 España juntasmenosraras Rare Genomics CheckRare Radio Enfermedades Raras y otras Investigaciones Fundación Isabel Gemio ReMexER Enfermedades Raras Mas Visibles Berta Neurolinkia
Looking forward joing on 12 April this #EUYouthWeek 2024 with a session at the Parliament on youth involvement in rare diseases research, together with Irene Norstedt and EURORDIS-Rare Diseases Europe !
EFNA’s latest e-learning module explores the EU Health Data Space (EHDS)- what it can be used for, what protections are in place for EU #health data, and how it can be used to support policy implementation:
efna.net/courses/ehds-f…
WHO/Europe Foresight in Rare Disease Policy EURORDIS-Rare Diseases Europe
#IGAP #Rare2030
Amanda Bok Professor Lara Bloom Brian O Mahony Derick Mitchell Yann Le Cam Nicola Bedlington Stefan Gijssels Nicholas Brooke National Health Council IAPO It’s a pleasure to work on this important and ambitious initiative with such an incredible group of patient advocates!