Expressing support for the designation of Undiagnosed Awareness Month.

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

<DOC>

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.
                                 <all>