Mar Mañú Pereira

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

[ERN EuroBloodNet @ERNEuroBloodNet]

@Europarl_EN @EU_Commission @EHA_Hematology @EU_Health @EU_HaDEA @jardin_EU_JA 👏Yesterday also marked another important milestone: María del Mar Mañú Pereira officially began her role as Chair of the Coordinators of the 24 ERNs.

We congratulate her on this new responsibility and look forward to further strengthening collaboration across the #ERNs!

[ERN EuroBloodNet @ERNEuroBloodNet]

🌍Yesterday, María del Mar Mañú Pereira, contributed to the high-level policy event Health without Postcodes – Accelerating Access to Rare and Complex Disease Therapies in Europe, where she moderated the final exchange with Members of the European Parliament.

[Vall d'Hebron Institut de Recerca @VHIR_]

.@vallhebron lidera un projecte europeu per provar per primera vegada en pacients pediàtrics un nou fàrmac, ibrilatazar, més eficaç i menys tòxic contra el càncer infantil. Finançat amb 8,5M€ per la @ComissioEuropea.

#RecercaPediàtricaVH @AbilityPharma
🔗https://t.co/V4aFZ9Jda4

[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