As you know, living with a chronic disease can sometimes feel lonely. But you aren’t alone and may feel less lonely when connecting with others in the beta thalassaemia community. You may find it helpful to hear other people’s stories about living with beta thalassaemia and how they are trying to achieve the balance between managing their disease and living life their way. In addition to learning from these experiences, you can help them with yours too.
Getting in touch with beta thalassaemia organisations can be a useful way to find practical and emotional support. You can find them on this page.
Beta thalassaemia organisations
One way to connect with others living with thalassaemia is to get in touch with a group or organisation that is led by patients, their carers and families. To join a group or organisation near you, you can ask your healthcare team or local NHS trust to refer you to one.
Many people find local support groups via social media. Often people living with beta thalassaemia set up groups on social media to connect with others who share their disease. You might find these or other informal groups through word of mouth or even via your hospital. It may be worth asking your healthcare team if they know of any such groups. You and your loved ones may find you gain a lot from sharing experiences and tips in these forums.
Joining a community can help you achieve a balance between managing your beta thalassaemia and living life your way. Discovering the different ways others are living their lives can help you feel confident about finding your own path.
Vertex would like to acknowledge this website was created with the support of individuals from the patient community, Thalassaemia International Federation, who were acting as contracted consultants for Vertex.
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