More than just an organization, advocacy partner, the Rare Genomics Institute (RG), is a community dedicated to helping rare disease patients find hope for a cure. Sharing a mission of working alongside patients and their families, both ThinkGenetic and the RG understand the importance of providing the necessary tools, knowledge, and connections so patients can better understand the cause of their disease.
“We’ve been very impressed with the support the Rare Genomics Institute provides those living with or caring for those with rare diseases,” explains, Len Barker, CEO of ThinkGenetic. “Not only through their pro-bono sequencing services but also by providing a platform where rare disease patients can join their community and talk to each other.”
Founded in 2011 to fill the health care gap for undiagnosed rare disease patients, 80% of which are genetic in nature, RG helps individuals find a pathway to a cure by individualized access, coordination and execution of genetic sequencing and research services with RG and its affiliates. RG also supports rare disease advocacy by fostering an online community of rare disease patients, and supporting rare disease research through a yearly grant competition.
Rare Genomics is grateful to join the ThinkGenetic Partner Program” says Romina Ortiz, COO, VP, Patient Advocacy for RG. “By working together, we can reduce inefficiencies in genetics and create opportunities for our patients. Especially in the context of rare diseases, we hope to reduce fragmentation and unite forces to meet the needs of patients with such significant and complex needs.”
The Rare Genomics Institute provides many free services that focus on sequencing and research. Their philanthropic clinical program with Illumina, known as iHope, provides pro-bono reanalysis of sequencing. To learn if you are eligible please visit: https://www.raregenomics.org/rg-patient-advocacy.
Photos Courtesy of Rare Genomics Institute
Rare Genomics is a 501(c)(3) non-profit operating since 2011 with the goal to bridge the health care gap for undiagnosed rare disease patients. Through international patient advocacy, we specialize on clinical genomic sequencing, research and funding. We work with patients, researchers, clinicians, biotech companies and other patient advocacy organizations to accelerate the path to a diagnosis, treatment and hopefully one day a cure. Learn more at www.raregenomics.org.
ThinkGenetic enters into Advocacy Partner agreements with organizations, support groups and charities to share information, increase public awareness of genetic conditions and provide trustworthy resources to those living with or caring for someone with a genetic disorder. Learn more and view current partners at news.thinkgenetic.com/advocacy-partner-program or email firstname.lastname@example.org for information about enrollment in the program.