RESOURCES
A space for you to find some more information, support and any other helpful bits and bobs.
Resources
A space for you to find out more and improve your knowledge, understanding and grow in your allyship for people with Sickle Cell Disorders.
NICE Guidelines
This guideline covers how healthcare professionals should be managing acute painful sickle cell episodes in children, young people and adults who present at hospital, from presentation until when they are discharged. It aims to reduce variation in how acute episodes are managed in hospital, focusing on effective, prompt and safe pain relief.
There is a patient/public outline
The Red Cell Network
The Red Cell Network (TRCN), led by University College London Hospitals NHS Foundation Trust aims to support the provision of specialist and non-specialist haemoglobinopathy services to adults and children with sickle cell disorder, thalassaemia and other rare inherited anaemias.
The website provides bitesize education sessions and training resources for free and for all.
They also worked with advocates including myself to create a new patient's guide to living with sickle cell disorder - PATIENT HUB
National Heart, Lung and Blood Institute
A US site with resources, patient information and current research information.
Sanius Health
Developing insights to revolutionise healthcare.
Blending genomics, records, monitoring and phenotype data, Sanius delivers deepening health insights that drive better outcomes as well as clinical research and drug discovery. They aim to develop health understanding for patients, healthcare providers and research.
They are also running a healthcare watch programme for patients with SCD