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.

[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 404 Introduced in House (IH)]

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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--

    (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;
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--

    (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
    Resolved, That the House of Representatives--
            (1) supports the designation of ``Prader-Willi Syndrome 
        Awareness Day'';
            (2) applauds the efforts of advocates and organizations 
        that encourage awareness, promote research, and provide 
        education, support, and hope to those impacted by Prader-Willi 
        syndrome;
            (3) recognizes the commitment of parents, families, 
        researchers, health professionals, and others dedicated to 
        finding an effective treatment and eventual cure for Prader-
        Willi syndrome; and
            (4) recognizes the importance of, with respect to Prader-
        Willi syndrome--
                    (A) improving awareness and educating the public;
                    (B) encouraging accurate and early diagnosis;
                    (C) advancing research;
                    (D) developing new treatments, diagnostics, and 
                cures; and
                    (E) identifying regulatory pathways for drug 
                development of rare diseases like Prader-Willi 
                syndrome.
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