H.Res. 1223

[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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