Us Congress 2025-2026 Regular Session

Us Congress House Bill HR209 Compare Versions

Only one version of the bill is available at this time.

Old	New	Differences
1	1	IV
2	2	119THCONGRESS
3	3	1
4	4	STSESSION H. RES. 209
5	5	Expressing support for the designation of April 5, 2025, as ‘‘Barth Syndrome
6	6	Awareness Day’’.
7	7	IN THE HOUSE OF REPRESENTATIVES
8	8	MARCH10, 2025
9	9	Mr. T
10	10	ONKO(for himself, Mr. BILIRAKIS, Ms. MATSUI, Mr. NORMAN, Mrs.
11	11	T
12	12	RAHAN, Mr. WILSONof South Carolina, and Mr. AUCHINCLOSS) sub-
13	13	mitted the following resolution; which was referred to the Committee on
14	14	Energy and Commerce
15	15	RESOLUTION
16	16	Expressing support for the designation of April 5, 2025,
17	17	as ‘‘Barth Syndrome Awareness Day’’.
18	18	Whereas Barth syndrome is a rare, life-threatening, genetic
19	19	disorder which primarily affects males;
20	20	Whereas Barth syndrome is caused by a mutation in the
21	21	tafazzin gene (TAFAZZIN, also called G4.5), resulting in
22	22	an inborn error of phospholipid metabolism, affecting
23	23	many systems of the body;
24	24	Whereas Barth syndrome is a multisystem disorder with
25	25	characteristics including abnormalities of heart and skel-
26	26	etal muscle, low levels of certain white blood cells called
27	27	neutrophils that help to fight bacterial infections, and
28	28	delays in growth;
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31	31	•HRES 209 IH
32	32	Whereas with probably fewer than 10 new Barth infants
33	33	identified each year in the United States, the incidence
34	34	of Barth syndrome is likely only 1 in every 300,000 to
35	35	400,000 births and could be as few as 1.5 in 1 million;
36	36	Whereas globally there are approximately 300 individuals di-
37	37	agnosed with Barth syndrome, and, in the United States,
38	38	there are fewer than 150 individuals diagnosed with
39	39	Barth syndrome;
40	40	Whereas Barth syndrome can be fatal in childhood due to
41	41	heart failure or uncontrollable infection, with approxi-
42	42	mately 50 percent of deaths due to Barth syndrome oc-
43	43	curring within the first year of life and 85 percent before
44	44	the fifth year of life;
45	45	Whereas individuals with Barth syndrome who survive to
46	46	adulthood often have a severely limited life expectancy;
47	47	Whereas individuals with Barth syndrome, like many other
48	48	rare disorders, experience challenges with obtaining a di-
49	49	agnosis, limited treatment options, and difficulty finding
50	50	and accessing treatment centers and physicians with ex-
51	51	pertise in Barth syndrome;
52	52	Whereas because the disorder affects multiple systems of the
53	53	body, a patient with Barth syndrome often requires ac-
54	54	cess to care from experts across a range of medical spe-
55	55	cialties;
56	56	Whereas the Barth Syndrome Clinic at Kennedy Krieger In-
57	57	stitute is the only interdisciplinary clinic dedicated to the
58	58	diagnosis and treatment of Barth syndrome in the United
59	59	States;
60	60	Whereas, to date, there is no treatment for Barth syndrome
61	61	that is approved by the Food and Drug Administration
62	62	(FDA);
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65	65	•HRES 209 IH
66	66	Whereas there is a critical need for research and development
67	67	to advance treatments for Barth syndrome;
68	68	Whereas, as a result of the Orphan Drug Act, there have
69	69	been important advances in research on and treatment
70	70	for rare diseases, including development efforts in Barth
71	71	syndrome;
72	72	Whereas the FDA established the Accelerated Approval Path-
73	73	way in 1992 and Congress codified the pathway in 2012;
74	74	Whereas the Accelerated Approval Pathway is an important
75	75	pathway for rare and ultrarare diseases as it allows for
76	76	‘‘earlier approval of drugs that treat serious conditions,
77	77	and fill an unmet medical need . . .’’;
78	78	Whereas Congress and the FDA have affirmed the impor-
79	79	tance of incorporating the patient perspective throughout
80	80	the drug review process through the FDA’s Patient-Fo-
81	81	cused Drug Development program;
82	82	Whereas the Barth Syndrome Foundation, a nonprofit orga-
83	83	nization established in 2000 to accelerate progress
84	84	through collaboration between families and scientists, is
85	85	dedicated to educating, advancing treatments, and find-
86	86	ing a cure for Barth syndrome;
87	87	Whereas the Barth Syndrome Foundation sponsors ‘‘Barth
88	88	Syndrome Awareness Day’’ in the United States to in-
89	89	crease public awareness and generate additional support
90	90	for Barth syndrome; and
91	91	Whereas ‘‘Barth Syndrome Awareness Day’’ is expected to be
92	92	observed in the United States for years to come, pro-
93	93	viding hope and information for patients, caregivers, and
94	94	families around the country: Now, therefore, be it
95	95	Resolved, That the House of Representatives— 1
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98	98	•HRES 209 IH
99	99	(1) supports the designation of ‘‘Barth Syn-1
100	100	drome Awareness Day’’; and 2
101	101	(2) recognizes the importance of, with respect 3
102	102	to Barth syndrome— 4
103	103	(A) improving awareness; 5
104	104	(B) encouraging accurate and early diag-6
105	105	nosis; 7
106	106	(C) advancing research; 8
107	107	(D) developing new treatments, 9
108	108	diagnostics, and cures; and 10
109	109	(E) identifying regulatory pathways for 11
110	110	drug development of ultrarare diseases like 12
111	111	Barth syndrome. 13
112	112	Æ
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