Rare Genomics Institute: Infographic (Accelerating Cures across the Rare Disease Landscape)
The dynamically changing landscape of rare disease treatments is largely attributed to increasing global awareness. Rare Genomics Institute (RG) is playing a major role empowering the rare disease patient and accelerating cures. Its journey, since inception in 2011, is shown above. This informational graphic highlights its role in empowering the rare disease patient as well as the progress in helping the rare disease community.
RG is a community dedicated to helping rare disease patients – through helping overcome scientific, financial, and logistical barriers. Focused efforts are invested in the individual rare disease patient by helping them fund for their genomic sequencing through a unique crowd funding mechanism. RG also facilitates connections to genome sequencing institutes as well as physicians and researchers that are experts in their fields. The generated genetic sequence for their specific disease, would then be used to identify explicit treatments tailored just for the rare disease patient, thus enabling precision medicine.
RG also built an online social hub, the RareShare, dedicated to patients affected by rare medical disorders, their families, and healthcare professionals. It provides the rare disease patient communities a platform where they can share experiences and best practices, have access to latest research, resources and physician input. Another way RG is raising awareness is the ongoing production of “Ask the Expert” podcast series by RareShare, to help educate patient communities.
RG helps leverage social media for not only advocating awareness and building relationships, but also engaging all stakeholders such as patients, physicians, scientists, caregivers, philanthropists in working towards a common goal of accelerating cures for the rare disease patient.
Rare Genomics Institute (RG) expresses appreciation to Piktochart for helping create the infographic below: