Mar Mañú Pereira

@vallhebron @mireiadt @radio4_rne Felicitats @mireiadt molt bona entrevista.

La Dra. @mireiadt, coordinadora del Programa de Malalties Minoritàries  i de la Unitat de Malalties Metabòliques de #VallHebron, parla a @radio4_rne de la importància del cribratge neonatal en la detecció de #MalalatiesMinoritàries i el seu tractament. rtve.es/play/audios/di…

💜​With #RareDiseaseDay on 28 February approaching, we’ll be dedicating this week to sharing patient-centered content, including stories and materials co-created from their testimonials, to help raise awareness. 🌍 Available in 8 languages: youtube.com/playlist?list=…

#ASH25 Poster Session was also an excellent opportunity for members of the #RADeep Steering Committee & Data Access Committee to exchange insights and discuss challenges and perceptions regarding care, treatment access, and inclusion in clinical trials for people living with RADs

🌍 This work presents a data validation and quality framework aligned with FAIR principles (Findable, Accessible, Interoperable, Reusable) and the European Medicines Agency recommendations, aimed at building a cross-border European SCD multi-modal real-world dataset.

📣​NEWS from the #ASH25! Sara Reidel is presenting “Data validation and quality framework for building a european multimodal real-world dataset for clinical outcome research in sickle cell disease” at the 67th ASH Annual Meeting. 🔗meetings-api.hematology.org/api/abstract/v… #RADeep #hematology

New EHA Unplugged podcast episode: 𝐄𝐭𝐡𝐢𝐜𝐚𝐥 𝐂𝐨𝐧𝐬𝐢𝐝𝐞𝐫𝐚𝐭𝐢𝐨𝐧𝐬 𝐢𝐧 𝐆𝐞𝐧𝐞 𝐓𝐡𝐞𝐫𝐚𝐩𝐲 𝐟𝐨𝐫 𝐒𝐢𝐜𝐤𝐥𝐞 𝐂𝐞𝐥𝐥 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐚𝐧𝐝 𝐓𝐡𝐚𝐥𝐚𝐬𝐬𝐞𝐦𝐢𝐚 Tune in to hear Prof Mariane de Montalembert from Necker-Enfants Malades Hospital in France discuss the current standards and challenges in the care for patients with sickle cell disease and thalassemia, both in Europe and in Sub-Saharan Africa.  Find us on Spotify, Apple Podcasts, YouTube, and major podcast platforms: tr.ee/UjtOhgNtsG

RADeep Presentations at #ASH25: ✅meetings-api.hematology.org/api/abstract/v… ✅meetings-api.hematology.org/api/abstract/v… ✅meetings-api.hematology.org/api/abstract/v… ✅meetings-api.hematology.org/api/abstract/v… 🤝 This is a fantastic recognition of the collective work of our network and the growing impact of #RADeep research efforts.

📣We are pleased to announce that RADeep will participate in the 67th #ASH Annual Meeting and Exposition! ✅This year, we will present four key contributions focused on real-world data, outcome research in hemoglobinopathies, and Europe-wide data standardization efforts.

📍​Dr. María del Mar Mañú Pereira (RADeep Coordinator and Scientific Coordinator of the @ERNEuroBloodNet & #ENROL) presented “Towards ethical AI in Rare Diseases: data quality and clinical validation for real equity” at the XXXI National Congress on Health Law in Madrid, Spain.

🎤​Anna Collado Gimbert (@vallhebron) presented “Sickle cell disease in europe: A cross-border real-world data analysis from the radeep registry” at #ASH25! ​🔗Find out more: ​meetings-api.hematology.org/api/abstract/v… #ASH25 #RADeep #Hematology #Research #Innovation #Healthcare

💻#NOW! ​Poster session at #ASH25: “Implementing patient-centered PROMs in sickle cell disease care: A european consensus approach” Presenter: Anna Collado Gimbert (@vallhebron) 🔗Find out more: ​meetings-api.hematology.org/api/abstract/v… #ASH25 #RADeep #Hematology #Research #Innovation

📣​The RADeep team is at #ASH25 in Orlando! We’re excited to be part of the 67th @ASHematology Annual Meeting, taking place from December 6-9, 2025, at the Orange County Convention Center in Orlando, Florida. ​​🩸 hematology.org/meetings/annua… #RADeep #Hematology #Research

New EHA Unplugged podcast episode: 𝐏𝐨𝐢𝐧𝐭-𝐨𝐟-𝐜𝐚𝐫𝐞 𝐓𝐞𝐬𝐭𝐬 𝐟𝐨𝐫 𝐍𝐞𝐨𝐧𝐚𝐭𝐚𝐥 𝐒𝐜𝐫𝐞𝐞𝐧𝐢𝐧𝐠 𝐨𝐟 𝐒𝐢𝐜𝐤𝐥𝐞 𝐂𝐞𝐥𝐥 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐰𝐢𝐭𝐡 𝐏𝐫𝐨𝐟 𝐁é𝐚𝐭𝐫𝐢𝐜𝐞 𝐆𝐮𝐥𝐛𝐢𝐬 Prof Béatrice Gulbis discusses her contributions to implementing neonatal screening for sickle cell disease (SCD) in low-resource countries, as well as her hopes for a global collaborative approach to improving care for patients with SCD. Find us on Spotify, Apple Podcasts, YouTube, and major podcast platforms: tr.ee/Udk4BhjGwF

Dr. María del Mar Mañú, PI of the Childhood Cancer and Blood Disorders group #VHIR, talks at the @EHA_Hematology podcast about #RADeep, an @ERNEuroBloodNet European patients registry on Rare Anaemia Disorders. #RecercaPediàtricaVH Listen to it 👇 youtu.be/THpjnQhTE1U?si…

Thank you very much to @ERNEuroBloodNet for the kind invitation to participate in this webinar series focused on IPFDs. I have the chance to show the @GEAPC1 experience on platelet aggregation in our patients

🎧Discover the latest episode of the @EHA_Hematology Unplugged podcast, “Point-of-care Tests for Neonatal Screening of Sickle Cell Disease”, featuring Prof. Gulbis Béatrice, Co-Coordinator of ERN-EuroBloodNet. 🎙️Listen to the full episode here: youtube.com/watch?v=OwIekj… #ERNs

📢​Curious about the future of gene therapy in hemoglobinopathies? Join Prof. Mariane de Montalembert in the next ERN-EuroBloodNet #ThursdayWebinar: 🗓️"Gene therapy for hemoglobinopathies: a pediatric specialist’s view" 🔗 Register: eurobloodnet.eu/education/thur… #ERNs #ERNeu

El 21 de junio de 2025 se celebrarán las terceras jornadas de ASAFE dirigido a Socios de Asafe, profesionales y público en general interesado en Enfermedad Falciforme asafefalciforme.org/tercera-jornad…

Coincidiendo con el Día Mundial de las Células Falciformes (19 de junio), Rosalía Segura, secretaria de la Asociación Española de Enfermedad Falciforme (ASAFE), nos habla sobre la enfermedad aelmhu.es/vivir-con-la-e…