Stone Soup Group (SSG), was one of 20 organizations across the nation to be awarded a Global Genes Rare Capacity Building Grant. Global Genes is a national organization whose mission is to connect, empower and inspire the rare disease community.
“SSG believes there may be 466 individual cases of rare disorders across Alaska. Navigating resources and information related to genetic conditions is challenging,” said Alexandra Fogarty, SSG Program Director. “Because Alaska is experiencing a shortage of pediatric genetic services, this is making it more difficult for families to access information, services, and support. So we are very excited to be awarded this capacity building grant from Global Genes.”
Grant funds will be used to pilot a Rare Care Informed Family Navigation Training Curriculum. This new curriculum will equip SSG staff to help Alaskan families with rare genetic disorders and know where to go for resources. This is another way for SSG to support families and be part of the solution for helping those living with rare disorders find the resources they need to care for their families
Information about Global Genes can be found at www.globalgenes.org