IndoUSrare Quarterly Webinar Series
Inaugural Guest Speaker
Nicole Boice, Co-Founder, RARE-X; Founder, Global Genes, will share her inspiring journey through global rare disease advocacy
The IndoUSrare quarterly webinar series is an educational event designed to provide a platform for sharing scientific, policy, and advocacy topics related to rare diseases across the world. We plan to bring diverse speakers from various specialties and geographies tailored to the interests of rare disease communities.
In this introductory webinar, guest speaker Nicole Boice, Co-Founder Rare-X; Founder of Global Genes, will be sharing her exemplary journey through global rare disease advocacy work. The inaugural webinar will be hosted by Dr. Reena Kartha, Director of Research Programs at IndoUSrare.
Speaker Bio:
Nicole founded Global Genes in September 2008 catalyzed by a friend whose son was born with a rare genetic condition called Jouberts Syndrome. Their journey to a diagnosis is what inspired Nicole to create Global Genes and become a committed champion for rare disease patients and their families.
Nicole successfully launched and built Global Genes into a multi-million dollar non-profit organization, fulfilling the vision and mission of creating a connected, empowered, and inspired global rare disease community. Since its inception, Global Genes has impacted hundreds of thousands of patients worldwide, engages with over 700 rare disease patient advocacy organizations in over 25 countries, and has partnered with over 100+ biopharma partners and academic research institutions. Global Genes has become an important hub and connecting point for the global rare disease ecosystem.
In addition to her role at Global Genes, Nicole has co-founded RARE-X, a new non-profit, that is set to become the largest collaborative patient-researcher data engagement and federated data platform the world over. The intention is to accelerate disease understanding, diagnosis, and the development of future cures. This will be world-changing.
About IndoUSrare:
IndoUSrare builds collaborative bridges between the West & the East to accelerate clinical research. A non-profit 501(c)(3) tax-exempt organization for connecting Asian-Indian diaspora affected by RARE diseases with global clinical trials. https://indousrare.org/
Free Webinar Registration: https://bit.ly/indousrare
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