Community

We're stronger together!

Living with a chronic condition can sometimes feel lonely – but you're not alone. We recommend that you reach out to other people with beta thalassaemia. These people can best understand how you are doing, as they have gone through the same things. Hearing about how they manage their everyday lives with beta thalassaemia can help you. You can learn from the experiences of others and also share your own. This way, you can all help each other to grow.

You can find patient organisations in your area here: https://www.degetha.org/

Helpful websites:

Family portal of the German Federal Ministry for Family Affairs, Senior Citizens, Women and Youth https://familienportal.de/familienportal
Family advice hub https://www.familienratgeber.de/

Patient organisation for thalassaemia and all rare diseases

https://www.degetha.org/

Many people use social media to find support nearby. There are even people with beta thalassaemia who start their own groups on social media so they can network with other patients. Perhaps other people with beta thalassaemia could recommend specific social media sites to you. You can also ask your treatment team or a patient organisation whether they know any social media sites dealing with beta thalassaemia.

Being part of a community can have a positive impact on living with beta thalassaemia. Listening to stories from others can help you determine your own life.

I meet up with other beta thalassaemia patients. I can tell them what's on my mind right now or I can ask them questions, such as whether they know anything about this or that.

A patient with beta thalassaemia, 29 years of age.

We do various things together in the group: we cook together, there are opportunities to play sport, and much more. There is also information about how other people handle their thalassaemia and which hospitals are nearby. We often also organise little competitions for children in our group, and the whole family is welcome there.

A patient with beta thalassaemia, 42 years of age.

Vertex Pharmaceuticals (Germany) GmbH would like to mention that this website was produced with the support of Thalassaemia International Federation (TIF) and the patient organisation DEGETHA in its capacity as a contractual advisor to Vertex Pharmaceuticals (Germany) GmbH.

Special thanks go to the patient representative Kostas Tsourlis, who is active in Germany in the Rare Anemia Association (SAM) e.V. and the Thalassaemia International Federation (TIF), among others.

See how Kostas deals with his illness in this video. .