Official text as published. Use Ctrl+F / Cmd+F to search within the document.
[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1060 Introduced in House (IH)]
<DOC>
119th CONGRESS
2d Session
H. RES. 1060
Expressing support for the designation of April 5, 2026, as ``Barth
Syndrome Awareness Day''.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
February 11, 2026
Mr. Tonko (for himself, Mr. Bilirakis, Ms. Matsui, Mr. Norman, Mrs.
Trahan, Mr. Auchincloss, Mr. McGarvey, Ms. Davids of Kansas, Mr. Wilson
of South Carolina, Mrs. Biggs of South Carolina, and Mr. Latimer)
submitted the following resolution; which was referred to the Committee
on Energy and Commerce
_______________________________________________________________________
RESOLUTION
Expressing support for the designation of April 5, 2026, as ``Barth
Syndrome Awareness Day''.
Whereas Barth syndrome is a rare, life-threatening, genetic disorder which
primarily affects males;
Whereas Barth syndrome is caused by a mutation in the tafazzin gene (TAFAZZIN,
also called G4.5), resulting in an inborn error of phospholipid
metabolism, affecting many systems of the body;
Whereas Barth syndrome is a multisystem disorder with characteristics including
abnormalities of heart and skeletal muscle, low levels of certain white
blood cells called neutrophils that help to fight bacterial infections,
and delays in growth;
Whereas, with probably fewer than 10 new Barth infants identified each year in
the United States, the incidence of Barth syndrome is likely only 1 in
every 300,000 to 400,000 male births and could be as few as 1.5 in
1,000,000 male births;
Whereas globally there are approximately 300 individuals diagnosed with Barth
syndrome, and, in the United States, there are fewer than 160
individuals diagnosed with Barth syndrome;
Whereas Barth syndrome can be fatal in childhood due to heart failure or
uncontrollable infection, with approximately 50 percent of deaths due to
Barth syndrome occurring within the first year of life and 85 percent
before the fifth year of life;
Whereas individuals with Barth syndrome who survive to adulthood often have a
severely limited life expectancy;
Whereas individuals with Barth syndrome, 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 Barth syndrome;
Whereas, because the disorder affects multiple systems of the body, a patient
with Barth syndrome often requires access to care from experts across a
range of medical specialties;
Whereas the Barth Syndrome Clinic at Kennedy Krieger Institute is the only
interdisciplinary clinic dedicated to the diagnosis and treatment of
Barth syndrome in the United States;
Whereas, to date, there is no treatment for Barth syndrome that is approved by
the Food and Drug Administration (FDA) for children under 30kg;
Whereas there is a critical need for research and development to advance
treatments for Barth syndrome;
Whereas, as a result of the Orphan Drug Act, there have been important advances
in research on and treatment for rare diseases, including development
efforts in Barth syndrome;
Whereas Congress and the FDA have affirmed the importance of incorporating the
patient perspective throughout the drug review process through the FDA's
Patient-Focused Drug Development program;
Whereas the Barth Syndrome Foundation, a nonprofit organization established in
2000 to accelerate progress through collaboration between families and
scientists, is dedicated to educating, advancing treatments, and finding
a cure for Barth syndrome;
Whereas the Barth Syndrome Foundation sponsors ``Barth Syndrome Awareness Day''
in the United States to increase public awareness and generate
additional support for Barth syndrome; and
Whereas ``Barth 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 ``Barth Syndrome Awareness
Day''; and
(2) recognizes the importance of, with respect to Barth
syndrome,--
(A) improving awareness;
(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 ultrarare diseases like Barth syndrome.
<all>