Rare Genomics Institute

Amplify hope - the amplify hope initiative is a study to help families develop and launch crowdfunding campaigns to raise funds for sequencing while at the same time measure the impact of community engagement. Through this study, families will be trained, supported and coached on crowdfunding strategies and then given 30 days to launch and run their own crowdfunding campaigns. Anyone, anywhere can donate to and support the families to help fund the diagnosis of these children. When funding is completed, sequencing of the child and both parents occurs. Surveys will be given to measure impact and all responses will be unidentifiable.

Rareshare - online social network for patients, families, healthcare professionals and others affected by Rare disease. We have over 1,000 different Rare disease communities with over 8,000 members; rareshare connects these communities via direct messaging and forum discussions. Rareshare also holds educational podcasts on topics and diseases of interest, featuring experts from around the world. A medical and clinical trial directory is also available for those wanting to explore additional treatment centers and options.

Patient advocacy team - once a family applies to rgi for assistance with genome testing, they are assigned a patient advocate who will work with them throughout the entire process. This includes identifying the rgi site (an rgi site consists of a research facility that is able to perform dna sequencing and a clinician and/or scientist that can interpret the data from sequencing) that best suits the needs of the patient, and providing support to the patient and family all the way through sequencing and results.

ALL OTHER PROGRAMS; BeHEARD, RareShare, and Science 2.0.