June 19th is World Sickle Cell Day, and to mark the occasion, ERN-EuroBloodNet & RADeep Network are proud to launch a 2-minute animated video animated video co-created with adolescents and young adults living with SCD across Europe.
This video tells their story. It was shaped in the ERN-EuroBloodNet patient workshop held during ASCAT 2024
The aim of this video is to raise awareness on the emotional and systemic challenges of transitioning from pediatric to adult care-a process that's often abrupt, unsupported, and deeply misunderstood.
In pediatric care, support systems are community-based, relational, and proactive. In adult care, everything is more individualized, fragmented, and clinical. Young people often go from being accompanied... to being alone. And if they're not followed in a dedicated SCD center, many struggle to find competent care, risking misdiagnosis, stigma, or under-treatment in emergency settings.
Transition isn't just about patients. It also requires preparing parents, who must learn to step back while continuing to support their children's growing autonomy. This emotional shift can be as complex as the medical one.
For healthcare professionals, a well-transitioned patient is more empowered. When patients understand their disease and care path, the doctor-patient relationship strengthens and outcomes improve.
Watch the full multilingual playlist on YouTube. Let's listen, amplify their voices, and reimagine the path to adulthood for young people with SCD!
Available in 8 languages (Dutch, English, French, German, Italian, Polish, Portuguese, and Spanish) to reach and reflect the diversity of voices across Europe.
What is Sickle Cell Disease and why does it matter?
Sickle Cell Disease (SCD) is a chronic inherited blood disorder that alters the shape and function of red blood cells. This leads to anemia, pain episodes, and long-term damage to organs.