Our Mission and the Amplify Hope Initiative
What is Amplify Hope?
Rare Genomics Institute is a non-profit that enables genome sequencing primarily for children with rare and orphan diseases. Our mission is to help these patients find diagnoses, treatment and cures. We connect expert scientists with families and utilize the most advanced technologies to diagnose and accelerate research for their children.
The Amplify Hope Initiative is a new 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.
We realize the frustration and financial costs that families with undiagnosed children face. Many families of children with rare diseases have been on a diagnostic odyssey, sometimes for years, trying to determine the exact cause of their child’s illness.
Help us inspire and Amplify Hope — Join Rare Genomics and our partners as we support these rare campaigns. Tell your friends to donate and spread the word as we launch the campaigns. This is an incredible opportunity to help undiagnosed children, learn about genomics and raise awareness for the rare disease community. We welcome your responses to our surveys, so Rare Genomics can continue to provide the best resources for undiagnosed and rare disease families.
Success At Rare Genomics
To date, Rare Genomics has helped over 250 families. In 2013, 83% of patients working with Rare Genomics who could not receive insurance coverage or obtain grant funding chose to crowdfund the cost of DNA sequencing. All Rare Genomics families who started crowdfunding reached their goal and 64% of families exceeded their crowdfunding target goal.
Giving Families Hope through DNA testing, Crowdfunding and Access to Experts
- 100% of Rare Genomics families reached their crowdfunding goal
- 64% of Rare Genomics families exceeded their crowdfunding target goal
- 61 active sequencing and research studies
- Individual attention from patient advocates