24 Feb Statement on Rare Disease Day, Research and Funding
UDNF Statement on Rare Disease Day 2025 Cancellation, Research Funding, and Policy Impacts on the Ultra-Rare and Undiagnosed Community...
Press Release
05 Feb Undiagnosed Diseases Network Foundation (UDNF) Launches Patient Navigation Program
/*! elementor - v3.19.0 - 29-01-2024 */ .elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=".svg"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block} WASHINGTON, D.C. (Feb. 6, 2024) – The Undiagnosed Diseases Network Foundation (UDNF), a patient-led nonprofit organization committed to improving access to diagnosis, research, and care for people with undiagnosed diseases, today launched its Patient Navigation...
31 Oct UDN PEER and UDNF Integrate Efforts to Strengthen Voice of UDN Participants
/*! elementor - v3.17.0 - 25-10-2023 */ .elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=".svg"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block} The Undiagnosed Diseases Network Patient Engagement and Advocacy Resource (UDN PEER) and the Undiagnosed Diseases Network Foundation (UDNF) are integrating efforts to amplify the voice of patients and participants in the undiagnosed and ultra-rare disease...
04 Oct Undiagnosed Diseases Network Foundation Strategic Plan 2023-2025
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...
13 Sep Connect, Learn, and Inspire at the RARE Advocacy Summit
/*! 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....
13 Sep Undiagnosed Diseases Network Foundation Receives $2.5 Million Grant to Launch Patient Navigation Program
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...
19 Jun Urgent Action Needed: Support Funding for the UDN
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...
01 Feb Introducing 2022 UDN PEER
By Sarah Marshall | February 1, 2022 As I write, sitting on the sofa in my living room, the image of being in a snow globe springs to my mind. Within my snow globe is a centerpiece that sits perfectly still, unflustered by the snowstorm that...
01 Oct Issues and Resources for Siblings of Children with Rare/Undiagnosed Conditions
By Jennifer L. Young, PhD, AMFT | October 1, 2019 Sibling relationships are often the longest, closest relationships we have in our lives. All parents hope that their children will get along and become best friends, but this isn’t always the case. And in families...