Suzàn Genova

Name and Surname: Suzàn Genova
Country: Bulgaria
Contact detail: suzan.m.genova@gmail.com
Association Name: Nataliya Foundation & FAST Bulgaria
Disease-related field: Isovaleric Acidemia (IVA) & Angelman syndrome
Role within the association: Chairperson
Short bio: Suzàn is a mother of a child with two rare diseases, dedicated to advancing research and clinical trials that bring hope to families impacted by rare conditions. Her aim is to build a strong community and act as a bridge for communication and understanding between patients and the clinical community, empowering families to find resilience and strength in facing new challenges. By profession, she is an accountant, but by destiny, she is a caregiver and advocate as an ePAG advocate at MetabERN (SPOC for the AOA Subnetwork) and ERN-ITHACA. She also holds key leadership roles as a Board Member and Head of Communications at the National Alliance Rare Diseases Bulgaria, as well as Chairperson of FAST Bulgaria and the Nataliya Foundation.