CAROLE HERMAN

CAROLE HERMAN

Carole holds a Master’s Degree in English from La Sorbonne and in Sciences of Education from Université de Paris-Est. She lives with her 18-year-old son in Paris. Carole has raised and educated her son alone and round-the-clock. Working for non-profit organizations since 2004 holding manifold volunteer positions to raise awareness on complex situations, Carole has pioneered the way for others too. When she is not working on advocacy, she enjoys going for strolls in Paris, chitchatting with rare moms from France, Europe and other countries in the world, going to Zumba, practicing yoga, TRX, swimming, reading, and thinking about implementing new projects.
On receiving her son’s diagnosis in July 2017, she realized professionals could not meet her needs as far as support was concerned. Some found it tricky to understand the effects of diagnosing a rare disease while some had never experienced it in their career. Therefore, she set up her own non-profit organization called, ADNP France Amis, founded in February 2018. Founding this non-profit allowed the rare syndrome to enter in the French health care system. She established a solid network with some of the best and trustful French physicians, their teams, social workers, professionals from the Commission of Disability in Paris. She is a reliable and trustful mother who has always been deeply involved in her son’s follow-up right from the outset.