Nicole is the founder of Global Genes, one of the world’s leading rare disease advocacy organizations.
Back in 2008, Nicole was the executive marketing officer of an investment banking firm. She became a rare disease champion after witnessing a close friend struggle to find a diagnosis for her sick son which eventually turned out to be Joubert syndrome — a rare disease for which there currently is no cure.
Determined to do something about it and seeing an opportunity to apply her past marketing experiences for good Boice founded Global Genes.
In its 10+ years in serving the rare disease community, Global Genes has reached over six million patients and advocates in 18 countries.
Global Genes aims to help families affected by rare diseases by connecting them with tools, resources and support needed to manage a rare condition.
“[A] rare disease patient’s journey is often overwhelming. It includes everything from finding a diagnosis, become disease experts, seed funding early research, community coordination, all the way to becoming savvy investors and biotech entrepreneurs,” Boice told Forbes.
“Global Genes has become a critical partner for patients all along this continuum, and is committed to continuing to innovate to ensure that wherever patient advocates reside, that they are equipped and empowered to be drivers and architects in their healthcare and that of the disease communities that they care about.”Tags: patient advocacy, rare diseases