WIB22: Am­ber Salz­man had few op­tions when her son was di­ag­nosed with a rare ge­net­ic dis­ease. So she cre­at­ed a bet­ter one

This pro­file is part of End­points News’ 2022 spe­cial re­port about Women in Bio­phar­ma R&D. You can read the full re­port here.

Am­ber Salz­man’s life changed on a cold, damp day in Paris over tiny plas­tic cups of luke­warm tea.

She was meet­ing with Patrick Aubourg, a French neu­rol­o­gist study­ing adrenoleukody­s­tro­phy, or ALD, a rare ge­net­ic con­di­tion that caus­es rapid neu­ro­log­i­cal de­cline in young boys. It’s a sin­is­ter dis­ease that of­ten leads to dis­abil­i­ty or death with­in just a few years. Salz­man’s nephew was di­ag­nosed at just 6 or 7 years old, and died at the age of 12.

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