Dear Friends and Supporters:It is with great enthusiasm and a deep sense of purpose that I introduce to you our Strategic Plan for the years 2023 to 2025. Our mission is clear: to improve access to diagnosis, research, and care for all individuals with undiagnosed and...
/*! elementor - v3.16.0 - 13-09-2023 */ .elementor-heading-title{padding:0;margin:0;line-height:1}.elementor-widget-heading .elementor-heading-title[class*=elementor-size-]>a{color:inherit;font-size:inherit;line-height:inherit}.elementor-widget-heading .elementor-heading-title.elementor-size-small{font-size:15px}.elementor-widget-heading .elementor-heading-title.elementor-size-medium{font-size:19px}.elementor-widget-heading .elementor-heading-title.elementor-size-large{font-size:29px}.elementor-widget-heading .elementor-heading-title.elementor-size-xl{font-size:39px}.elementor-widget-heading .elementor-heading-title.elementor-size-xxl{font-size:59px} Global Genes RARE Advocacy Summit Join Undiagnosed Diseases Network Foundation at the Global Genes RARE Advocacy Summit (formerly known as the Patient Advocacy Summit) September 19-21 at the Sheraton San Diego Hotel & Marina....
Washington, DC – The Undiagnosed Diseases Network Foundation (UDNF) announced today that it has received a $2.5 million grant from the Chan Zuckerberg Initiative (CZI) to launch a patient navigation and support program. The program will provide one-on-one case management to patients and families with...
By Adaline Dunnberg | June 19, 2023Your voice and actions matter! We need your immediate assistance in advocating for continued funding for the Undiagnosed Diseases Network (UDN). As the House and Senate finalize their 2024 budgets, we must ensure that the UDN receives the necessary support to...
By Casey West Robertson | June 7, 2023 As a parent and caregiver of an undiagnosed disease patient, we face many emotions and mental wellness challenges on our journey. Some of these emotions come in cycles when milestones are not met, and others come daily with the...
By Andrea Klein | June 7, 2023 As a mother of two children under the age of three, I think most would agree that life gets really busy. Add in an undiagnosed genetic condition shared by both children with a slew of medical complexities, most days feel...
By Kathleen Cisco | June 7, 2023 As clinical site coordinator for the UDN, I have a front row seat to the diagnostic odyssey. I am able to work directly and closely with the patients and families and come to know them intimately. By the time our...
By F. Sessions Cole, M.D. | June 7, 2023 Caring for the Undiagnosed - those children and adults whose symptoms do not fit into a known diagnostic category - impacts every involved provider through many rewards, challenges, and guilt. Here, I offer my personal perspective about...
By Amy Gray | April 28, 2023Washington, DC – The Undiagnosed Diseases Network Foundation (UDNF) joins forces with patient advocacy organizations around the globe to shine a light on undiagnosed diseases. Undiagnosed Day seeks to educate policy makers, researchers, and health professionals about the need...
By Amy Gray | April 18, 2023 Washington, DC – Today, a team of patients with undiagnosed and ultra-rare diseases, their family members, medical providers, and advocacy partners announced the launch of the Undiagnosed Diseases Network Foundation (UDNF). The organization aims to improve access to diagnosis,...