Lilya
Lilya is a mother of a child affected by a KCNB1 mutation and an active member of the KCNB1 France association. She has worked alongside other families to support fundraising efforts for research and aid for families dealing with the challenges of this rare genetic disorder.
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Monaco:
Lilya is a parent who, along with Laurent, is a member of the board of the KCNB1 association.
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