[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1223 Introduced in House (IH)]

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119th CONGRESS
  2d Session
H. RES. 1223

 Expressing support for the designation of Undiagnosed Awareness Month.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             April 28, 2026

  Mr. Pocan (for himself, Mr. Cline, Ms. Norton, and Mr. Rutherford) 
submitted the following resolution; which was referred to the Committee 
                   on Oversight and Government Reform

_______________________________________________________________________

                               RESOLUTION


 
 Expressing support for the designation of Undiagnosed Awareness Month.

Whereas approximately 25,000,000 Americans currently live with rare and 
        undiagnosed diseases, a significant portion of whom remain undiagnosed 
        for years or for life;
Whereas ``undiagnosed'' is defined as living with a medical condition that has 
        not been identified through clinical evaluation, even after extensive 
        testing and consultation with medical specialists;
Whereas patients with undiagnosed diseases often experience prolonged 
        uncertainty, delayed or inappropriate treatment, psychological distress, 
        and financial hardship;
Whereas the average diagnostic journey for a patient with a rare or ultrarare 
        disease can last over 7 years, often involving multiple referrals, 
        misdiagnoses, and unnecessary procedures;
Whereas, in recognition of the need to establish and develop a domestic 
        capability to coordinate and drive research on rare and unidentified 
        diseases within the United States, the Undiagnosed Diseases Network (in 
        this preamble referred to as ``UDN'') was created within the National 
        Institutes of Health in 2015;
Whereas, since the launch of the UDN in 2015, the strategic deployment of 
        clinical sites across the United States utilizing state-of-the-art 
        genomic sequencing and model organism research has led to the diagnosis 
        of more than 1,000 Americans and the discovery and identification of 
        more than ninety novel diagnoses;
Whereas the UDN's unique decentralized model brings together medical and 
        scientific expertise to push the cutting edge of the Nation's scientific 
        frontier, is now constituted by 24 UDN Clinical Sites providing access 
        to many Americans and is rapidly innovating by implementing the use of 
        artificial intelligence (commonly known as ``AI'') to further enhance 
        diagnostic capabilities;
Whereas the Undiagnosed Diseases Network Foundation (In this preamble referred 
        to as ``UDNF'') was created by those living undiagnosed to support and 
        improve access to diagnosis, research, and care for all individuals with 
        rare and undiagnosed diseases, including by championing the work of the 
        UDN;
Whereas the UDNF is a patient-driven nonprofit fostering community, support, 
        innovation, and action for families navigating the uncertainty of rare 
        and undiagnosed diseases;
Whereas the collaborative work of the UDN, NIH (in this preamble referred to as 
        ``NIH''), and UDNF offers an opportunity for access to diagnostic tools 
        and greater diagnostic precision so that patients, clinicians, and 
        treatments can be identified because without a diagnosis, there is no 
        treatment;
Whereas greater public awareness and medical education are critical to reducing 
        diagnostic delays and promoting equitable access to genomic and 
        diagnostic technologies;
Whereas the Director of the NIH included in the agency's fiscal year 2026 Budget 
        Justification executive summary that one of the NIH-wide Strategic Plan 
        Objectives would be to ``[b]y 2027, increase the capacity of the 
        Undiagnosed Diseases Network (UDN) to evaluate people with undiagnosed 
        diseases and expand access to individuals who do not typically 
        participate in NIH clinical research''; and
Whereas recognizing April as Undiagnosed Awareness Month and April 29th as 
        Undiagnosed Day honors the courage of patients and families living 
        without answers, acknowledges the dedication of clinicians and 
        researchers pursuing solutions, recognizes the need for a cohesive 
        effort to solve the most difficult medical mysteries, and inspires 
        continued innovation toward timely and accurate diagnosis: Now, 
        therefore, be it
    Resolved, That the House of Representatives supports the ideals and 
goals of Undiagnosed Awareness Month.
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