EuroBloodNet - European Reference Network on Rare Hematological Diseases

31/10/2025

📢​Save the date & register for the upcoming High-Level Meeting (HLM) on a European research and innovation ecosystem for rare diseases!

ERN-EuroBloodNet will proudly take part in the panel discussions, represented by María del Mar Mañú Pereira, our Scientific Coordinator. She will moderate Day 2, focused on EU Infrastructure & Skills: "Building pan-EU infrastructure to strengthen European Reference Networks and enhance capacity, including newborn screening and the use of data, registries and AI to expedite diagnosis and treatment initiation."

📍​December 9-11, 2025, in Brussels.
​🔗​Check the full program and register here: https://www.brains4brain.eu/eu-activities-polices/hlm-rare/check-the-programme-2025/

​🚨​A key objective of the HLM will be to advocate for the EU’s adoption of a European Declaration on Rare Diseases. This formal commitment aims to create a sustainable Research and Innovation Ecosystem for rare diseases, ensuring ongoing dialogue and collaboration among all relevant stakeholders. Additionally, we will push for dedicated funding to be allocated within the next Multiannual Financial Framework (MFF) 2028-2034.

Let’s shape the future of rare disease research together!🌍​

European Commission

30/10/2025

🎧Discover the latest episode of the European Hematology Association (EHA) Unplugged podcast, “Point-of-care Tests for Neonatal Screening of Sickle Cell Disease”, featuring Prof. Gulbis Béatrice, Co-Coordinator of ERN-EuroBloodNet.

In this inspiring conversation, Prof. Gulbis, from the Université libre de Bruxelles (Belgium), shares her extensive experience implementing neonatal screening programs for sickle cell disease ( ) in in low-resource countries in Africa.

✴️​“Newborn screening for sickle cell disease is the first crucial step to get a diagnosis of the disease. The method used for screening should be the most adapted to the local context. It can be a simple, user-friendly point-of-care testing method dedicated to the disease or a more ‘complex’ method dedicated to many rare conditions included into a newborn screening programme.”

🎙️Listen to the full episode here:
https://tr.ee/Udk4BhjGwF

▶️ Watch on YouTube:
https://www.youtube.com/watch?v=OwIekjqdKfw

European Commission

Join us for this inspiring interview with prof Béatrice Gulbis from The Brussels University Hospital in Belgium who discusses her extensive work on implement...

28/10/2025

🎥New video! Building bridges for better transitions in Sickle Cell Disease

How can we ensure that young people living with rare diseases move safely from paediatric to adult care without losing access, confidence, or hope?

🤝​This short film, produced by the Sickle Cell Transitions Policy Lab in collaboration with ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases), brings together patients, clinicians, and policy experts to share why structured transition pathways are essential for equitable and person-centred care.

Through powerful patient stories and expert insights, the video highlights how the Sickle Cell Transition Charter can serve as a blueprint for improving continuity of care — not only in sickle cell disease, but across all rare diseases in Europe.

💬Featuring voices from across the European rare disease community, the film reminds us that transition is not just a change in care setting — it is a crucial step in a young person’s life journey that must be supported, planned, and valued.

🎬Watch now on our YouTube channel: https://youtu.be/POEBC0YEMgM?si=2RdLnTygz6Zqhcjv

Together, we can make transitions safer, fairer, and truly person-centred.

European Commission

Description:This video, produced by the Sickle Cell Transitions Policy Lab in collaboration with ERN-EuroBloodNet, explores how structured and person-centred...

27/10/2025

📣Ciclo di webinar per associazioni di pazienti!

📌 Tema in Primo Piano – Politiche sanitarie europee per i pazienti
Organizzato da ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) & FITHAD, con Loris Brunetta, ePAG Representative.

📅 Seconda sessione: 29/10/2025, ore 17.00 CET
💻 Tema: Regolamento sulle Sostanze di Origine Umana (SoHO)
🗣️Speaker: Gabriella Peluso Cassese
📍 In italiano – gratuito – aperto a tutti.

👉 Scopri il programma completo e registrati qui:

🔗https://eurobloodnet.eu/education-2/patients-organizations-health-professionals-educational-program/topic-on-focus-eu-health-policy-for-patients-organizations/topic-on-focus-eu-health-policy-for-patients-organizations/

Condividi con pazienti, attivisti e operatori interessati!

27/10/2025

📢​Not yet registered? Don't miss the next Thursday webinar in three days!

The are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).🌟​

🎙️ Speaker: Bertrand Arnulf
📅 Don’t miss it, secure your spot today!
👉 Register here: https://lnkd.in/dFCJVT2R

📰 Subscribe to our monthly newsletter and stay up to date on all educational activities, events, and more! https://lnkd.in/gsHTsEm

24/10/2025

🌍Members, Affiliated Partners & Patient Organisations: Get ready for the 7th ERN-EuroBloodNet Progress Meeting!

Join us to:
🔹 Catch up on the latest actions & achievements
🔹 Explore new collaboration opportunities
🔹 Connect with experts across Europe

🗓 Thursday, 6th November | 💻 Online

Take a look at the provisional agenda and register here: https://eurobloodnet.eu/news/678/ern-eurobloodnet-7th-progress-meeting-will-be-held-the-6th-november-2025-online-register-now

23/10/2025

Bridging the gap: presenting the Sickle Cell Transition Charter at the European Parliament🌍​

📍​On 16 October 2025, the European Parliament hosted a high-level roundtable on “Bridging the Gap: Sickle Cell Disease as a Case Study of Paediatric to Adult Transition in Rare Disease”, organised by the Sickle Cell Transitions Policy Lab in collaboration with the European Sickle Cell Federation (ESCF) and -EuroBloodNet (European Reference Network on Rare Hematological Diseases).

During the event, Mariangela Pellegrini, representing ERN-EuroBloodNet, presented the Charter for Optimal Transitions in Sickle Cell Disease — a collective policy framework developed with clinicians, patients, and experts across Europe to strengthen continuity of care between paediatric and adult services.

​✳️​The discussion, moderated by Mario Ottiglio from the World Coalition on Sickle Cell Disease (WCSCD), brought together key voices including Hélène Le Borgne from the European Commission (DG RTD.D2 – Health Innovations & Ecosystems), Mimi Minsiemi, patient advocate from Belgium from European Federation of Sickle Cell, and MEP Vytenis Andriukaitis, former European Commissioner for EU Health and Food Safety, now Member of the European Parliament.

Speakers highlighted that the transition from paediatric to adult care remains a critical point of vulnerability for many young people living with rare diseases — often leading to fragmented care, poorer outcomes, and increased long-term health costs.

The Charter identifies four key pillars for effective transition:

1️⃣ Setting the right foundations
2️⃣ Early and structured preparation
3️⃣ Holistic, multidisciplinary care
4️⃣ Continuous follow-up and evaluation

​🎯​As underlined during the debate, European Reference Networks ( ) have a central role to play in bridging this gap — by connecting expertise, harmonising data, and supporting Member States in implementing evidence-based transition policies.

At ERN-EuroBloodNet, we remain committed to advancing this work, ensuring that every young person living with sickle cell disease, and other rare haematological conditions, can move safely and confidently into adult care with the support they need and deserve.

🔗​
Read more about the Charter: ​https://www.mhpgroup.com/the-charter-for-optimal-care-transitions-from-paediatric-to-adult-care-in-sickle-cell-disease/

Euractiv coverage: https://www.euractiv.com/opinion/bridging-the-gap-sickle-cell-disease-as-a-case-study-of-paediatric-to-adult-transition-in-rare-disease/

Policy Lab video: https://youtu.be/POEBC0YEMgM?si=2RdLnTygz6Zqhcjv

European Commission

20/10/2025

🚨 Register now for the upcoming ERN-EuroBloodNet Thursday Webinar!

These educational sessions are designed to foster interest in highly innovative topics and highlight the latest cutting-edge advances in Rare Hematological Diseases for healthcare professionals across Europe.

The are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).🌟​

🎙️ Speaker: Bertrand Arnulf
📅 Don’t miss it, secure your spot today!
👉 Register here: https://eurobloodnet.eu/education/thursdays-webinars/58/update-in-the-treatment-of-al-amyloidosis-and-monoclonal-gammopathies-of-clinical-significance

📰 Subscribe to our monthly newsletter and stay up to date on all educational activities, events, and more! https://eurobloodnet.eu/newsletter/

09/10/2025

🌍 – Sexual Health and Sickle Cell Disease: Patient Educational Sessions by ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) & RADeep Network

At ASCAT 2025, ERN-EuroBloodNet & RADeep organised a three-day patient educational programme focused on sexual health and Sickle Cell Disease ( ). An essential yet often under-addressed aspect of care.

💬 Key points from the patient plenary:

🔸​Sexual health is a fundamental component of quality of life and remains an unmet need in SCD.

🔸​Participants highlighted the importance of open, stigma-free discussions on pain, intimacy, fertility, and emotional wellbeing.

🔸​Patients and caregivers called for sexual health to be integrated into care pathways, professional training, and research agendas.

We sincerely thanks all patients and caregivers for their active participation, openness, and valuable input that will help inform future educational and policy activities.

We also thank the teaching faculty for their expertise and contribution to this year’s sessions:

Marine Driessen – Obstetrics & Prenatal Diagnostics, Maternité Necker, Paris.
Martin Colard – Hematology, HULB, Brussels.
Kofi A. Anie – Psychologist, NHS, London.
Gabriela Medina – Psychologist, Gregorio Marañón Hospital, Madrid.
Elena Cassinerio & Giovanna Graziadei – Ospedale Maggiore Policlinico, Milan.
Noemi Roy – Hematologist, Oxford University.

Together, these discussions represent a step forward in recognising sexual health as an integral part of comprehensive, patient-centred SCD care.

09/10/2025

🌍 Patient-driven insights in Sickle Cell Disease: results from a Global survey informing public health strategies.

At , Mariangela Pellegrini on behalf of the ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) presented the results of a global survey developed in collaboration with the Sickle Cell Disease Lancet Haematology Commission and ASCAT, aiming to place experiences of people living with SCD at the center of public health priorities.

🩸The survey engaged people living with Sickle Cell Disease (SCD), their families, and caregivers across the world, collecting perspectives on research, education, and policy.

🔑 Key insights:
· Global consensus on the need to invest in innovative therapies, health professional training, and early screening.

· Equitable access to curative treatments and recognition of SCD as a disability emerged as top priorities.

· Participants emphasized the importance of addressing racial bias, psychosocial support, and care equity, particularly in low-resource settings.

💬 These findings highlight the power of patient-driven evidence to shape advocacy, policy, and research for a fairer future in SCD care.

👏 A big thank you to our partners and steering committee: Mariangela Pellegrini (Greater Paris University Hospitals - AP-HP) Lan-Lan Smith (The Lancet Haematology), Dr Frédéric B. Piel (Imperial College London), David-Zacharie Issom (ESCF), Baba Inusa (Novo Nordisk), Gulbis Béatrice (Université libre de Bruxelles-ERASME Hospital), mariane de Montalembert (AP-HP Necker Hospital), María del Mar Mañú Pereira (Vall d’Hebron Institute of Research (VHIR) - Vall d'Hebron Institut de Recerca), and Raffaella Colombatti (Azienda Ospedale Università Padova).

02/10/2025

✅ Day 1 | ERN-EuroBloodNet & RADeep Network – Patients Session at !

𝗦𝗲𝘅𝘂𝗮𝗹 𝗛𝗲𝗮𝗹𝘁𝗵 𝗣𝗿𝗼𝗴𝗿𝗮𝗺 𝗳𝗼𝗿 𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝘄𝗶𝘁𝗵 𝗦𝗶𝗰𝗸𝗹𝗲 𝗖𝗲𝗹𝗹 𝗗𝗶𝘀𝗲𝗮𝘀𝗲
🔹Today’s focus: Understanding the impact of Sickle Cell Disease on Sexual Health

✴️​Mixed-gender session covering medical aspects;
✴️​Sexual function;
✴️​Communication with partners;
✴️​Strategies for sexual well-being;
✴️​Interactive Q&A with specialists.

🎯This is the first step of a a three-day program dedicated to sexual health in sickle cell disease. The sessions combine medical insights, practical guidance, and open discussions in both mixed-gender and gender-specific groups, closing with a joint workshop and plenary presentation.

01/10/2025

🩸​The 20th Annual Sickle Cell & Thalassaemia Conference, hosted by ASCAT , officially kicked off today!

📍The ERN-EuroBloodNet and Network are proud to be present with a dedicated booth, come visit us!

✴️During the the ERN-EuroBloodNet / RADeep SCD Patients Session, will take place from 2 to 4 October 2025: “Sexual Health Program for Patients with Sickle Cell Disease”

A three-day program dedicated to sexual health in sickle cell disease. The sessions combine medical insights, practical guidance, and open discussions in both mixed-gender and gender-specific groups, closing with a joint workshop and plenary presentation.

🔗 Stay tuned for updates and insights from the conference!