Content of the Video:
• Meet the expert: SCD expert physicians answering questions from people living with SCD.

The Panel is made by 2 paediatricians, 2 adults haematologists. Speeches are about those 5 topics identified with a survey submitted to SCD patients:

• Newborn and infant SCD Screening, Stephan Lobitz, Germany
• Neurogical Complications in SCD, Maddalena Casale, Italy
• Adult Patients Quality of Life, Jeremy Anderson, UK
• BMT: survival infertility and other complications, Jean-Hugues Dalle, France
• New therapies for SCD, John Brewin, UK

Sickle Cell Disease patients and parents’ patients Educational Session at the 15th Annual Sickle Cell and Thalassaemia Conference 2020 (ASCAT) is a joint project of ERN-EuroBloodNet, ASCAT and BSH.

This project has provided for the second year the perfect opportunity for people living with SCD to experience how important is to participating in Research’s Agenda, while demonstrated that the medical profession is willing to change and listen to the patient voice.

49 people living with SCD have registered to the online educational session.

According to the ASCAT 2020 program, each session of the program were moderated by one healthcare professional and one person living with SCD. Educational' topics had been identified by participants as being important for research at the 2019 ASCAT. In addition, topics had been prioritized by people affected as requiring more information from a EuroBloodNet Survey. The program was held online. All participants had opportunities to ask questions in chat and/or live.

In detail, those are the sessions included in the ASCAT 2020 SCD Patients Educational Program. It consisted of a mixture of live and pre-recorded presentations.

Living with SCD and coping with COVID19 Pandemic Outbreak, (access to hospitals, management of crisis, receiving information about Covid-19).
The participations of SCD patients to Research and Peer Reviewing.
Three panels. One "meet the experts" and two "meet the patients' session". Patients have addressed dedicated questions to physicians and physicians and young patients have addressed questions to adult patients.
Living with SCD as pediatric or young adult patients.

For more information about EuroBloodNet’s Webinars and how to participate in live sessions please visit the EuroBloodNet’s website: http://eurobloodnet.eu/​​​

ERN-EuroBloodNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States and covers Rare Hematological Diseases (RHD). Please visit the EuroBloodNet’s website to explore different initiatives we work on and how we can support patients and health professionals in the field of (RHD). http://eurobloodnet.eu/​​​

Created by ERN-EuroBloodNet.
Disclaimer: The content of this video represents the views of the authors only and it is their sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency (Chafea) or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains. ERN-EuroBloodNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are supported by the European Commission. For more information about the ERNs and the EU health strategy, please visit http://ec.europa.eu/health/ern​​​.

Music: Sunday Rain, by Cheel