Driving change in rare disease policy: Addressing health inequalities for people living with sickle cell disease

25. Oct 2022 — Register Here


25 October 2022 from 5.30 pm to 7 pm CET (European Parliament, Brussels, Belgium)

During the discussion, panellists will reflect upon health inequalities and challenges faced by sickle cell disease patients and that disproportionately impact patients in Europe.

In the context of the European Year of Youth 2022, this event will be an opportunity to discuss and reflect on future policies and innovations in healthcare that young people would like to see implemented to improve the health outcomes of people living with sickle cell disease.

The event will provide a unique opportunity to understand what it means to be a young rare disease patient, and more especially a sickle cell disease patient, including better understanding on symptoms, impact on mental health, well-being and daily life.

Participants will be then invited to discover a portrait photo exhibition which highlights the real impact and lived experiences of people living with sickle cell disease. This will be an opportunity to highlight the burden of management and systemic change needed to address the unequal treatment of people living with sickle cell disease.

To achieve our goals, it will require to ensure sickle cell disease patients have access to the same standard of care across the EU, do not face health inequalities and to introduce universal screening regardless of prevalence in society and an EU-wide patient registry for people with sickle cell disease. For that, all actors need to shape the change for sickle cell disease patients in Europe and beyond.

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