New Delhi: Rare Genomics Institute (RG) and the Organization for Rare Diseases India (ORDI) announced today that they are one of the recipients of Sanofi Genzyme’s 6th annual Patient Advocacy Leadership (PAL) Awards for 2016. RG and ORDI have won financial support for the development and dissemination of specialized Rare Disease online training modules.
The project is directed by RG Chief Operating Officer and Vice President, Patient Advocacy, Romina Ortiz.
“The goal of the project is to develop an e-learning educational resource to train patient advocate associates, patients, caregivers, physicians, and researchers to strengthen and optimize rare disease patient advocacy for pre-sequencing and post-sequencing support functions,” said Ms Romina Ortiz, MHS. “The content is highly specialized and includes genetics, heredity, next generation sequencing, with a special focus on rare disease, professional patient interaction, and privacy.”
On this project, RG partnered with Dr Harsha Karur Rajasimha and his team from ORDI, who will pioneer the first international distribution of these training materials, specifically contributing to the translation of these materials into Hindi and disseminating them amongst their rare disease network and direct content development for Lysosomal Storage Disorders. ORDI aims to connect with a subset of the roughly 490 million Hindi speaking population that consumes health information only in Hindi.
Web-based training materials are anticipated to be ready by Fall 2017 and will be disseminated directly to patient advocates working with thousands of disease-specific organizations. Materials will also be publically available for patients and caregivers through the RG and ORDI websites. If you are interested in knowing more about genome sequencing for rare diseases [email protected].