Do you live with Sickle Cell Disease or Thalassemia?
If you have experience of Sickle Cell or Thalassemia, or you’re the partner or carer of someone who has, we’re keen to hear from you.
NICE (the National Institute for Health and Care Excellence) is currently reviewing recommendations for a new gene therapy drug called Exa-cel, to be made available for patients with these blood disorders.
Anthony Nolan wants the real-life experience of blood disorder patients to be taken into account as they do this.
We need patient experts to help provide written and possibly oral evidence based on their personal experiences, to help inform NICE of the impact that Exa-cel could have for patients when existing treatments have not improved their quality of life.
If you are interested in getting involved or if you have any questions about this process, please email our Policy and Public Affairs team at public.affairs@anthonynolan.org.