Joined April 2011
- Tweets 3,461
- Following 738
- Followers 367
- Likes 2,661
20 Photos and videos
Mar Mañú Pereira retweeted
.@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
🔗vallhebron.social/phoenix-as…
1
4
9
215
Mar Mañú Pereira retweeted
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
1
2
3
109
Mar Mañú Pereira retweeted
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: master.vhir.org/master/maste…
1
4
450
Mar Mañú Pereira retweeted
🚀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.
🔗eurobloodnet.eu/education-2/…
4
6
163
Mar Mañú Pereira retweeted
Feb 23
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/diga-li-…
1
2
6
869
Mar Mañú Pereira retweeted
💜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=PL…
1
2
4
182
Mar Mañú Pereira retweeted
8 Dec 2025
#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
1
3
119
Mar Mañú Pereira retweeted
8 Dec 2025
🌍 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.
1
1
2
99
Mar Mañú Pereira retweeted
8 Dec 2025
📣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/…
#RADeep #hematology
1
1
3
106
Mar Mañú Pereira retweeted
12 Nov 2025
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
3
9
846
Mar Mañú Pereira retweeted
26 Nov 2025
RADeep Presentations at #ASH25:
✅meetings-api.hematology.org/…
✅meetings-api.hematology.org/…
✅meetings-api.hematology.org/…
✅meetings-api.hematology.org/…
🤝 This is a fantastic recognition of the collective work of our network and the growing impact of #RADeep research efforts.
1
5
57
Mar Mañú Pereira retweeted
26 Nov 2025
📣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.
1
2
6
191
Mar Mañú Pereira retweeted
2 Dec 2025
📍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.
3
6
128
Mar Mañú Pereira retweeted
7 Dec 2025
🎤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/…
#ASH25 #RADeep #Hematology #Research #Innovation #Healthcare
3
7
188
Mar Mañú Pereira retweeted
7 Dec 2025
💻#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/…
#ASH25 #RADeep #Hematology #Research #Innovation
1
4
263
Mar Mañú Pereira retweeted
6 Dec 2025
📣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/annu…
#RADeep #Hematology #Research
2
3
87
Mar Mañú Pereira retweeted
5 Nov 2025
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
4
9
747
Mar Mañú Pereira retweeted
10 Nov 2025
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=NFFW…
2
4
426
Mar Mañú Pereira retweeted
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
5
14
306
Mar Mañú Pereira retweeted
30 Oct 2025
🎧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=OwIekjqd…
#ERNs
2
4
113