Rare Woman

https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=e0508b93-1cde-4785-b9ae-c36724bde55a&pnum=4 When Alena Yartseva (Kuratova) founded the DEBRA Russia in 2011, she set out to support Russian families living with epidermolysis bullosa (EB) and ichthyosis. Fifteen years on, with one of the world’s largest registries in genetic skin disease, a network of specialist centres across the country and federal funding for every EB patient now secured, her foundation has reached a conclusion drawn from its own data: the emotional condition of the mother is tracking her child’s clinical picture, and the centre of rare disease care needs to move with it.