VEGH Mariann

Mariann Vegh is the founder and President of the ASNSD Research Association, a global rare disease research nonprofit created following the diagnosis of her son, Erik, with Asparagine Synthetase Deficiency (ASNSD), an ultra-rare neurometabolic disorder.

Driven by the urgent need for a treatment, Mariann leads a parent-driven effort bringing together researchers, clinicians and patient families internationally to accelerate therapeutic development, including an AAV gene therapy programme currently progressing through preclinical development.

Alongside her advocacy work, Mariann is a digital marketing and brand leader with more than 15 years of international experience. She brings this background in strategy, execution and cross-market collaboration to rare disease research — building scientific partnerships, mobilising funding and helping turn the urgency experienced by families into structured, actionable progress toward treatment.

She is passionate about the role that patients and parents can play as active partners in research and in accelerating innovation for ultra-rare diseases.