Article published in Pharmafile’s Autumn 2020 edition “Providing rare disease patients with the support they deserve”

Bojana Mirosavljevic, PhD, Patient Engagement Officer at Ergomed/PSR Orphan Experts, recounts how the loss of her daughter to a severe form of Batten disease, and her experience overcoming the challenges of rare disease diagnosis in Serbia, still drives her work to put the patient at the centre of rare disease research.

Bojana Mirosavljevic, PhD, Patient Engagement Officer at Ergomed/PSR Orphan Experts, recounts how the loss of her daughter to a severe form of Batten disease, and her experience overcoming the challenges of rare disease diagnosis in Serbia, still drives her work to put the patient at the centre of rare disease research.

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