Letter to UDN Families: Winter UDNF Organization Updates

By Troy Evans | October 5, 2022

Autumn is already here (or finally here, I guess, if you’re one of those who prefers it above all other seasons) and work for UDN sustainability continues by so many wonderful people. Many things, including legislative advocacy efforts, have been wildly successful this year. You may have even seen the direct questioning by Congress to the acting NIH Director about the NIH’s funding plans for the UDN’s future. If you haven’t, and would like to, please reach out to me or UDN PEER.

Another component of sustainability efforts has been the progress of the Undiagnosed Diseases Network Foundation (UDNF.) The UDNF spent the summer completing some intense strategic planning sessions with key stakeholders, representatives of the UDN, and patients and families. The foundation has officially completed the 1023 submission to the IRS. Upon successful review by the IRS, it will grant 501(c)(3) status making the UDNF a tax-exempt organization.

The UDNF is a patient-led organization representing patients with undiagnosed and ultra-rare diseases, and their families, with a mission to improve access to diagnosis, research, and care for all with undiagnosed and ultra-rare conditions.

Essentially, the goal of the UDNF is to improve the outcomes and experiences in the diagnostic and the therapeutics process. And to also improve the best practices and support for patients with undiagnosed and ultra-rare discuses. The UDNF – Until rare is not a barrier.

Thanks to many of you, it is our firm belief that the UDN will continue. And I, for one, couldn’t be more thrilled about that.