IV 

118TH CONGRESS 

1ST SESSION H. RES. 404 

Expressing support for the designation of May 15, 2023, as ‘‘Prader-Willi 

Syndrome Awareness Day’’ to raise awareness of and promote research 

on the disorder. 

IN THE HOUSE OF REPRESENTATIVES 

MAY 15, 2023 

Mr. TONKO (for himself and Ms. SALAZAR) submitted the following resolution; 

which was referred to the Committee on Energy and Commerce 

RESOLUTION 

Expressing support for the designation of May 15, 2023, 

as ‘‘Prader-Willi Syndrome Awareness Day’’ to raise 

awareness of and promote research on the disorder. 

Whereas Prader-Willi syndrome (PWS) is a rare genetic disorder and the most common of the genetic disorders that 

cause life-threatening obesity in children; 

Whereas PWS usually results from problems on chromosome 

15; 

Whereas PWS is a complex genetic disorder that occurs in 

approximately 1 out of every 15,000 births; 

Whereas, in the United States, there are approximately 

10,000 to 20,000 living individuals with PWS; 

Whereas PWS affects— 


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•HRES 404 IH 

(1) males and females with equal frequency; and 

(2) all races and ethnicities; 

Whereas PWS causes an extreme and insatiable appetite, 

often resulting in severe obesity; 

Whereas severe obesity is the major cause of death for individuals with PWS; 

Whereas one of the main symptoms of PWS is the inability 

to control eating and constant hunger, and other symptoms include low muscle tone and poor feeding as an infant, delays in intellectual development, and difficulty 

controlling emotions; 

Whereas PWS causes cognitive and learning disabilities and 

behavioral difficulties, including obsessive-compulsive disorder and difficulty controlling emotions; 

Whereas PWS affects many aspects of the person’s life, including eating, behavior and mood, physical growth, and 

intellectual development; 

Whereas PWS can affect hormone production and cause 

other health complications; 

Whereas PWS can lead to obesity and related complications 

such as heart issues, diabetes, and high blood pressure; 

Whereas studies have shown that individuals with PWS have 

a high morbidity and mortality rate; 

Whereas individuals with PWS, like many other rare disorders, experience challenges with obtaining a diagnosis, 

limited treatment options, and difficulty finding and accessing treatment centers and physicians with expertise 

in PWS; 

Whereas there is no known cure for PWS; 


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•HRES 404 IH 

Whereas early diagnosis of PWS allows families to access 

treatment, intervention services, and support from health 

professionals, advocacy organizations, and other families 

who are dealing with PWS; 

Whereas discovered treatments, including the use of human 

growth hormone, are improving the quality of life for individuals with the syndrome and offer new hope to families, but many difficult symptoms associated with PWS 

remain untreated; 

Whereas increased research into PWS— 

(1) may lead to a better understanding of the disorder, more effective treatments, and an eventual cure for 

PWS; and 

(2) is likely to lead to a better understanding of 

common public health concerns, including childhood obesity and mental health; 

Whereas there is a critical need for research and development 

to advance treatments for PWS; 

Whereas studies have shown that individuals with PWS have 

a high morbidity and mortality rate; 

Whereas the Prader-Willi Syndrome Association, a nonprofit 

organization established in 1975, provides parents and 

health care professionals with a national and international network of information, support services, and research endeavors to expressly meet the needs of children 

and adults with PWS and their families; 

Whereas the organization comprises parents, professionals, 

and other interested individuals who are taking active 

roles in improving the lives of people with PWS; 

Whereas the goals of the organization include— 


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(1) normalizing life for people with PWS and their 

families; 

(2) improving communication and education; and 

(3) acting as a lifetime advocate for affected individuals; 

Whereas the association also supports research, interdisciplinary communication, and increased professional knowledge of treatments; and 

Whereas ‘‘Prader-Willi Syndrome Awareness Day’’ is expected to be observed in the United States for years to 

come, providing hope and information for patients, caregivers, and families around the country: Now, therefore, 

be it 

1 Resolved, That the House of Representatives— 

2 (1) supports the designation of ‘‘Prader-Willi 

3 Syndrome Awareness Day’’; 

4 (2) applauds the efforts of advocates and orga5 nizations that encourage awareness, promote re6 search, and provide education, support, and hope to 

7 those impacted by Prader-Willi syndrome; 

8 (3) recognizes the commitment of parents, fam9 ilies, researchers, health professionals, and others 

10 dedicated to finding an effective treatment and even11 tual cure for Prader-Willi syndrome; and 

12 (4) recognizes the importance of, with respect 

13 to Prader-Willi syndrome— 

14 (A) improving awareness and educating 

15 the public; 


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1 (B) encouraging accurate and early diag2 nosis; 

3 (C) advancing research; 

4 (D) developing new treatments, 

5 diagnostics, and cures; and 

6 (E) identifying regulatory pathways for 

7 drug development of rare diseases like Prader8 Willi syndrome. 

Æ 


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