RESOURCES AND SUPPORT
The Understanding Beta-Thalassemia brochure has helpful information about the genetics of beta (β)-thalassemia, how to build your care team, advances in beta-thal research, and more. Download the brochure to have this information handy whenever you need it.
Setting goals, especially small ones, can help you plan your future with beta-thalassemia. The Goals Guide is an interactive journal that helps you set short- and long-term goals to share with your care team. First you’ll take a moment to reflect, then you’ll look ahead to your future. Once your goals are set, you can talk to your doctor about making sure your beta-thalassemia management plan aligns with your goals.
Learning more about the underlying cause of your beta-thalassemia can help you better understand the signs and symptoms you may experience. This one-page infographic explains how genes, proteins, and red blood cells play a role in your beta-thalassemia, as well as the potential effects on your body if not treated properly.
To people who don't know about your condition, you may appear fine, which makes it difficult for them to understand what you're going through. This guide is intended to help you educate others on beta-thalessemia and the ways it can impact your life.
These organizations may be able to help. Explore the groups below for more information.
- Cooley's Anemia Foundation
- Thalassemia Support Foundation
- Thalassaemia International Federation
- National Organization for Rare Diseases (NORD)
- EveryLife Foundation for Rare Diseases
- Global Genes
bluebird bio, Inc. is not responsible for the content provided by third party sites or organizations, nor does bluebird bio, Inc. endorse the content of these sites or organizations. This is not a comprehensive list of resources and it is provided for reference only.