“A person who has been newly diagnosed with a rare disease, as well as their family, can feel overwhelmed and isolated. Today it can take months, if not years, for people with a rare disease to get support, learn about disease-specific advocacy groups, and connect with other patients who have gone through what they are now facing,” said Charlene Son Rigby, CEO of Global Genes. “The RARE Navigator Program will help to eliminate a critical gap in support for families facing rare disease.”
Anyone touched by a rare disease understands the need for a strong support network. Shannon Bennett, RARE Concierge Patient Navigator and parent to a beautiful rare little girl, Kenzie, outlines the need for an experienced team as part of her village of support, not only at the time of diagnosis, but beyond. Having gotten Kenzie’s diagnosis at HDVCH, Shannon is now supporting other families facing similar challenges. Hear more of her story here.
The RARE Navigator Program will enroll newly diagnosed patients from both the HDVCH Newborn Intensive Care Unit (NICU) and children or adults from Corewell Health’s Medical Genetics Clinic. The six-week program will take a holistic approach to providing support and education to newly diagnosed patients by working to understand and address the unique challenges they may face. Additional follow up will be provided at three-months, six-months, and one year to address new needs that may have arisen. RARE Navigator will also enable patients and families to effectively share their stories, become confident co-partners in their treatment plans as well as activated advocates within the rare disease community.
“As we continue to see more patients diagnosed with a rare disease, the need for support, guidance, and hope only increases. The RARE Navigator Program with Global Genes provides us the opportunity to better serve our community by connecting patients and families with people who have already walked the rare disease journey. This more personal connection will help our patients and enhance the care that we provide at HDVCH”, said Caleb Bupp, MD, Division Chief of Medical Genetics and Genomics, Corewell Health Helen DeVos Children’s Hospital.
The RARE Navigator Program is anticipated to run at least through the end of 2024, and upon completion, Global Genes will evaluate the program and explore the feasibility of expanding to other leading healthcare institutions.
“We expect RARE Navigator to address a significant need for patients and their families impacted by a rare disease at a time when they can feel hopeless,” said Son Rigby. “We’re going to equip them to address their diagnosis and arm them with the knowledge, support, and connections they need to find their village.”
About Global Genes
Global Genes is a 501(c)(3) nonprofit rare disease patient advocacy organization dedicated to providing patients and advocates with a continuum of services to accelerate their path from early support and awareness through research readiness. Using a collaborative approach that involves biopharma, researchers and advocates with data as a central core, Global Genes also enables research and data collection through the RARE-X research program. Through this effort, Global Genes is building the largest collaborative patient-driven, open-data access initiative for rare diseases globally.
About Corewell Health™
People are at the heart of everything we do, and the inspiration for our legacy of outstanding outcomes, innovation, strong community partnerships, philanthropy and transparency. Corewell Health is a not-for-profit health system that provides health care and coverage with an exceptional team of 60,000+ dedicated people—including more than 11,500 physicians and advanced practice providers and more than 15,000 nurses providing care and services in 22 hospitals, 300+ outpatient locations and several post-acute facilities—and Priority Health, a provider-sponsored health plan serving more than 1.3 million members. Through experience and collaboration, we are reimagining a better, more equitable model of health and wellness. For more information, visit corewellhealth.org.
Media Contact
Lauren Alford, Global Genes, 4042168058, [email protected]
Andrea Finnigan, Corewell Health, 616-486-2535, [email protected]
SOURCE Global Genes
