Mar Mañú Pereira

Rare anaemia disorders Research Lab
Vall d'Hebron Research Institute @vhir
ERN-EuroBloodNet Scientific Coordinator @ERNEuroBloodNet @vallhebron

[ERN EuroBloodNet @ERNEuroBloodNet]

Yesterday, Dr María del Mar Mañú Pereira, Scientific Coordinator of ERN-EuroBloodNet and current Vice-Chair of the 24 #ERNs, partcicipated in the High-level conference on Patients’ Rights and the European Reference Networks in the European Union.🌍
​
#RareDiseases #EUHealth

[Vall d'Hebron Institut de Recerca @VHIR_]

El Dr. Josep Quer ja t’ho diu… 😜
Si t’interessa la recerca biomèdica i millorar la vida dels pacients, el Màster en Recerca Biomèdica Translacional del #VHIR  és per a tu 👇
 #MàsterVHIR

Més informació i inscripcions: https://t.co/wCiS1SqAcn

[ERN EuroBloodNet @ERNEuroBloodNet]

🚀​Are you ready to explore the cutting-edge world of Artificial Intelligence in hematology?

ERN-EuroBloodNet and @SYNTHEMA_EU are proud to launch a joint educational program on #AI, designed for both the public-at-large and expert audiences.

🔗​https://t.co/R47MCdqOFG

[Mar Mañú Pereira @mmanupe]

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

[Vall d'Hebron @vallhebron]

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.

https://t.co/nGZBd3WPFc

[ERN EuroBloodNet @ERNEuroBloodNet]

💜​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: https://t.co/XlJjhyLnre

[RADeep Network @RADeep_network]

#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

[RADeep Network @RADeep_network]

🌍 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.

[RADeep Network @RADeep_network]

📣​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.

🔗https://t.co/UiPxu61jJZ

#RADeep #hematology

[European Hematology Association @EHA_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: https://t.co/xiQx1394M4

[RADeep Network @RADeep_network]

RADeep Presentations at #ASH25:
✅https://t.co/cCFntb7ZsA
✅https://t.co/2ut99fQZqC
✅https://t.co/UiPxu60LUr
✅https://t.co/EJORzkA9KO

🤝 This is a fantastic recognition of the collective work of our network and the growing impact of #RADeep research efforts.

[RADeep Network @RADeep_network]

📣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.

[RADeep Network @RADeep_network]

📍​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.

[RADeep Network @RADeep_network]

🎤​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: ​https://t.co/cCFntb8xi8

#ASH25 #RADeep #Hematology #Research #Innovation #Healthcare

[RADeep Network @RADeep_network]

💻#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: ​https://t.co/2ut99fRxga

#ASH25 #RADeep #Hematology #Research #Innovation

[RADeep Network @RADeep_network]

📣​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. ​​🩸

https://t.co/M1ynRm7lBr

#RADeep #Hematology #Research

[European Hematology Association @EHA_Hematology]

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: https://t.co/GEEXPQYVON

[Vall d'Hebron Institut de Recerca @VHIR_]

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 👇
https://t.co/Ju5WRzvRSi

[Grupo Español de Alter. Plaquetarias Congénitas @GEAPC1]

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

[ERN EuroBloodNet @ERNEuroBloodNet]

🎧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:
https://t.co/KXXrIGRJU5
#ERNs