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For World Sickle Cell Day 2024, ERN-EuroBloodNet is gathering the voices of people living with Sickle Cell Disease globally via a survey.

2024-06-19
For World Sickle Cell Day 2024, ERN-EuroBloodNet is gathering the voices of people living with Sickle Cell Disease globally via a survey.

Updated second version of the anonymous survey to assess the points of view of people living with Sickle Cell Disease (patients, parents of patients, caregivers, partners, siblings) on how to improve outcomes in Sickle Cell Disease.

The survey is organised by the ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases), the ASCAT (Annualy Accademy for Sickle Cell and Thalassemia Conference) Steering Commitee and the Lancet SCD Commission.   

We are pleased to introduce an updated version of our anonymous survey designed to capture the perspectives of those living with Sickle Cell Disease (SCD). This iteration builds on a previously circulated questionnaire, with refined and translated questions to better reflect the experiences.

If you participated in the initial survey, we kindly ask for your input once again, as your insights are crucial to our research. Your continued participation is highly valued and greatly appreciated.


This global survey targets individuals living with SCD (patients, parents of patients, caregivers, partners, and siblings) and aims to:

1.    Prioritize actions needed to improve outcomes for SCD.
2.    Gather feedback on additional unmet needs not addressed by the current strategy outlined in the survey.

The topics covered in this survey are the result of extensive multi-annual work by ERN-EuroBloodNet, ASCAT, and the Lancet SCD Commission, which involved listening to the SCD community and identifying their challenges and needs.

The survey is presented in English; however, translations of the survey are available as PDF to download for the following languages: French, German, Greek, Italian, Spanish, Portuguese, Arabic, Lingala, RDCongo. 

We invite you to participate in the survey by clicking hereit will take no more than 10 minutes!

Or you can scan this QR code to the survey: