Rare Gene Superheroes
Romina Ortiz, COO and VP of Patient Advocacy was the grateful recipient of Sanofi Genzyme’s 6th annual Patient Advocacy Leadership (PAL) Awards for 2016. For this award, Rare Gene Superheroes was created.
Rare Gene Superheroes is an e-learning educational resource consisting of four, 20-minute interactive, online modules aimed to train patient advocates with the goal of strengthening and optimizing rare disease patient advocacy pre-sequencing and post-sequencing support functions. In partnership with Dr. Harsha Karur Rajasimha and his team from Organization for Rare Diseases India (ORDI), materials on two Lysosomal Storage Diseases: Niemann-Pick and Tay-Sachs were produced, as well as the translation of all material to Hindi.
The work of a patient advocate at RG is highly specialized and requires specific knowledge and expertise in genetics, sequencing, special focus on rare disease, professional patient interaction, and privacy. Providing quality, uniform training to patient advocates, is critical to successful patient outcomes.
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Applying Next Generation Sequencing and Transgenic Models to Rare Disease Research
By Arvin M. Gouw, Amritha Jaishankar, and George A. Brooks
