In October 2019, with the support of ASCAT, ERN-EuroBloodNet and Oxford Blood Group, 30 people living with sickle cell disease from 13 different countries met together in London at the ASCAT 2019 conference. This forum talked about the needs to be improved for patients with sickle cell disease all over the world. Those needs were prioritize in the Top 10 topics. You can read about this experience in the first post of the blog: https://sicklecellpatientpriorities.wordpress.com/2020/01/27/launch-of-the-sickle-cell-patient-priority-blog/
As for the group, we have decided to set up this blog together. Please feel free to send us text and photos which we will post and let us know how your opinion about the Top 10 Topics. Have you spoken to your clinician about this? Presented it at a meeting? What were the reactions? Where should we go from here?
If you want to post an article, please send to Mariangela.pellegrini(ELIMINAR)@aphp.fr an email writing as email's object : SCD BLOG and sending in attachment:
I consent to publish this article on the SCD blog https://sicklecellpatientpriorities.wordpress.com/ with my name and surname OR I consent to publish this article on the SCD blog https://sicklecellpatientpriorities.wordpress.com/ in anonymous way
Click to read the blog: https://sicklecellpatientpriorities.wordpress.com/