ERN RARE-LIVER Patient Representative at the EASL Congress 2024

´It was my first EASL congress. As patient and patient representative, it was exciting to spend 4 days in this world of sciences, world of doctors and researchers, always in mind to create a better world for the patients: better and earlier diagnosis, better treatments, more quaility of life. One of the keywords of the congress was ‘stigma’, something the patients suffer about, often mentioned, but less ideas about solutions. In some sessions, the “voice of the patient” was represented by a patient advocate. – very useful! Also, I assisted several presentations about “my disease,” which is Alpha-1 antitrypsin deficiency. Best updates – also useful! As ePAG member of ERN RARE LIVER I welcomed a lot of hepatologists at the ERN RARE LIVER booth, mainly doctors curious about ERN. Amazing to see the number of professionals not initiated in the landscape and activities of ERNs. Advocacy in ERNs – still a lot of work to do!`