How it started
The idea and proposal for the establishment of a patient led umbrella organisation began in October 2019 in Hamburg Germany. Further discussions and telecommunications lead to the decision to officially register as an organisation in February 2020. However, the unprecedented beginning of the Covid-19 pandemic disrupted planned events, leading to a hold off and re-structuring to enable alternative registration of the umbrella organisation.
2020 Virtual Launch
The European Sickle Cell Federation, was finally registered in Dublin, Ireland on the 5 th of June 2020 as a company limited by guarantee without shares. Launched virtually to the public officially on World Sickle Cell Day 2020, 19th June 2020, and with a follow-up first official educational webinar on the 20th of June 2020.