The Sickle Cell Disease Patients' Priorities Blog has been launched!
We invite everyone with sickle cell disease to send us entries for the blog
People living with sickle cell disease have many ideas about what is important to them, what could be done to improve their care, and importantly, what they think needs more thought and research so that they can live longer, healthier and happier lives. When research projects are planned, funding is applied for, and ethics committees consulted, the voice of people living with sickle cell disease needs to be front and centre.
Because individual voices are hard to hear, we got together in October 2019, with the support of ASCAT, ERN-EuroBloodNet and Oxford Blood Group to join our voices together. 30 people living with sickle cell disease from 13 different countries met in London at the ASCAT 2019 conference. This forum talked about what needs to be improved for patients with sickle cell disease all over the world. Those needs were prioritized in the Top 10 topics.
We now need to make sure these topics don't lie forgotten. It's time to publicize them and share good practice from around the world. So we invite everyone with sickle cell disease to send us entries for the blog. We are especially interested in hearing whether you have managed to get the word out, or if you know of any projects that have arisen as a result of these priorities.