A new online resource for people with rare diseases has been launched to help you find reliable information and answers to your questions. Called EXABO (the EXpert Online Advisory Board), this platform has been developed by the Medical Informatics Group of University Hospital Frankfurt, also the ERN-LUNG Coordinating site.
You can ask your question on the EXABO website and a medical expert in Europe who is specialised and experienced in your disease will respond.
On this platform, ERN-LUNG medical experts are grouped according to the rare disease area and language zone. Each of these expert groups is led by at least one moderator who assigns each incoming question to an expert to either give the answer to the question or to start a discussion with some or all of the experts before publishing a response. So whether you are concerned about the side effects of a new drug, or want advice about where to find a specialist centre near you, the EXABO experts could help you.
Read more about the conception and usage of EXABO here.