Carmen Teemer from Engstingen in Germany is our second new Patient Representativ.
Working as a speech therapist, she is familiar with anatomy, medical terms and diseases that lead to speech and swallowing disorders.
Carmen has been diagnosed with ADPKD and PLD in 2018. She was totally surprised by her diagnosis. Her father didn’t talk about his disease.
In the first two years of being diagnosed, she had a few frustrating and discouraging experiences with less experienced doctors in the field of PLD who did not listen and did not have time for her needs as a patient.
These experiences made her getting active as a patient representative.
ERN RARE-LIVER is pleased to have Carmen on board our PLD working group.