While Sickle Cell Disease (SCD) garnered increased global attention back in 2008 because the World Health Organisation (WHO) classified it as a health priority, to date knowledge and awareness levels are still low among the public. This is accompanied by examples of stigma and misperceptions even among key stakeholders and the wider healthcare community. With the EU identifying non-communicable and rare diseases as a priority for health research and innovation for the future – this report showcases the youth view and perspective on SCD. It does this by analysing:
• The knowledge and awareness levels of youth on SCD, its pain burden, their views on the best strategies to remove stigma, and what they want to learn more about.
• The screening status of young people.
• What youth see as key priority action areas for the future.
• Their views on the introduction of universal screening, and the creation of an EU-wide patient registry.
The insights were gained through a survey of 2,400 young people aged between 20 and 30 in France, Germany, Italy, Spain, the UK and Poland. Contributing to the need to increase awareness levels of SCD among the public, to remove the stigma faced by SCD sufferers, and to combat a general unwillingness to open-up about the disease, it highlights that more can and needs to be done to build back fairer and ensure health equity.