In an age when technological advances revolutionize healthcare, the rare disease patient can hope for positive health impacts that result from accurate diagnoses and potential therapies.
So, what do you do when you hit a wall each time you are seeking a diagnosis?
What if misdiagnosis followed by another misdiagnosis results in hopes being dashed?
Exome sequencing could be the solution that leads to a more precise or correct diagnosis. However, exome sequencing is expensive and the costs are not always covered by insurance.
Rare Genomics (RG) Institute is helping rare disease patients by using crowdfunding, as a means to generate money, to cover sequencing costs. Through our new initiative, Amplify Hope, a Templeton Foundation grant-funded study, RG has partnered with Indiegogo Life, YouCaring, and CrowdRise to help patients raise money. The enrolled participants receive free services as well as guidance to develop their own crowdfunding pages. This process will ultimately enable them access to genomic sequencing that would otherwise not be possible due to the high costs. All campaigns are designed to run for 30 days, each with the same goal amount.
By helping these patients, Amplify Hope aims to determine how crowdfunding can promote scientific research to help rare disease patients. Additionally, any funds raised above the goal amount will be used to help other undiagnosed children in need of sequencing.
Please join RG and our partners as we support these rare campaigns. Your donation will help families from each of the 10 campaigns to find answers to their rare disease.
For more information on the crowdfunding mechanisms employed by RG, read Nonprofit Teaches People to Raise Money for Rare Diseases through Crowdfunding, published in The Chronicle of Philanthropy.