News

13 Sep Connect, Learn, and Inspire at the RARE Advocacy Summit

Posted at 18:40h in News, Press Release

/*! 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....

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13 Sep Undiagnosed Diseases Network Foundation Receives $2.5 Million Grant to Launch Patient Navigation Program

Posted at 17:32h in News, Press Release

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...

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19 Jun Urgent Action Needed: Support Funding for the UDN

Posted at 20:24h in News, Press Release

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...

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07 Jun Two Scoops of Chocolate and Salty Tears

Posted at 03:00h in News

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...

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07 Jun Movement is Medicine

Posted at 02:00h in News

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...

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07 Jun A Privileged Observer

Posted at 01:00h in News

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...

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07 Jun Caring for the Undiagnosed: A Provider’s Perspective

Posted at 00:00h in News

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...

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27 Apr Patient Advocacy Organizations Partner to Host Undiagnosed Day on April 29, 2023

Posted at 12:00h in News

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...

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18 Apr UDNF Promotes Access and Equity for Undiagnosed and Ultra-rare Disease Patients

Posted at 00:33h in News

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,...

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07 Mar Tell Me More Lecture Series with the UDNF

Posted at 01:56h in News

By Adaline Dunnberg | March 7, 2023 Today, our friends at UDN PEER hosted a lecture titled “UDNF: Centering Patients in Diagnosis, Research, and Care” featuring the organization’s founding board members. Watch the interview conducted by Sarah Marshall, UDN PEER Co-chair, to meet...

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