•HRES 948 IH 
Whereas rare diseases disproportionately affect people of 
color, and rare disorders such as sarcoidosis, sickle cell 
anemia, Kawasaki disease, and some forms of lupus are 
known to affect minority populations at higher rates than 
the general population; 
Whereas a long history of discrimination and socioeconomic 
inequality has led to a health crisis for people of color in 
the United States, and both social and physical deter-
minants of health, which disproportionately negatively af-
fect people of color, contribute to this crisis; 
Whereas the rare disease community continues to face hur-
dles generally and people of color face additional hurdles 
in their quest for care, and flaws across the entire system 
often have deadly consequences and a compounding effect 
on the care that Black, Native American, Hispanic, 
Asian, and Pacific Islander individuals with rare diseases 
receive; 
Whereas the lack of information and knowledge about rare 
diseases by most medical professionals can result in fewer 
diagnoses, and it takes an average of 6 years to get a di-
agnosis of a rare disease, and even longer for people of 
color; 
Whereas delays in diagnosis and treatment can result in seri-
ous 
disease 
progression, 
and 
many 
patients 
are 
misdiagnosed multiple times before receiving an accurate 
diagnosis; 
Whereas over 95 percent of rare diseases lack Food and Drug 
Administration-approved treatments, and people of color 
have less access to specialists and innovative therapies; 
VerDate Sep 11 2014 
05:17 Apr 07, 2022
Jkt 029200
PO 00000
Frm 00002
Fmt 6652
Sfmt 6300
E:\BILLS\HR948.IH
HR948
pbinns on DSKJLVW7X2PROD with BILLS
•HRES 948 IH 
Whereas people of color make up more than 38 percent of the 
United States population, but people of color comprise 
only 16 percent of clinical research study participants; 
Whereas rare disease specialists are limited in number and 
are geographically scattered, compounding the challenge 
of securing a timely diagnosis and treatment from knowl-
edgeable professionals, and access to these specialists, ad-
vanced diagnostic tests, and to the limited therapies 
available can be prohibitively expensive for many families 
and geographically out of reach; 
Whereas innovative health management strategies and pa-
tient-centered care can improve access to care and treat-
ment for all individuals living with rare disease, including 
people of color; 
Whereas improving the state of research and clinical trials to 
address pipeline and systemic issues that inhibit commu-
nities of color from participating in research and clinical 
trials, increasing the number of rare disease researchers 
and medical students that come from communities of 
color, and increasing the participation of communities of 
color in research and clinical trials is necessary to im-
prove care for patients of color with rare diseases; 
Whereas 80 percent of rare diseases are genetic, and some 
genetic disorders such as sickle cell anemia, thalassemia, 
and hATTR amyloidosis are more likely to occur among 
people who trace their ancestry to a particular geographic 
area; 
Whereas 80 percent of the participants in genome-wide asso-
ciation studies are of European descent, which has dev-
astating implications for diverse populations with rare 
disease; 
VerDate Sep 11 2014 
05:17 Apr 07, 2022
Jkt 029200
PO 00000
Frm 00003
Fmt 6652
Sfmt 6300
E:\BILLS\HR948.IH
HR948
pbinns on DSKJLVW7X2PROD with BILLS
•HRES 948 IH 
Whereas proper understanding of the genomics of diverse 
ethnic populations is critical to increasing the speed of di-
agnosis for rare diseases; 
Whereas, relative to the number of diseases and scope of 
need, very few therapies for rare diseases, known as ‘‘or-
phan drugs’’, are being developed due, in part, to the lim-
ited prevalence of populations with rare disease; 
Whereas the genesis of many inequities in the United States 
health care system stem from a precursor disparity in re-
search and availability of new treatments; 
Whereas patients and caregivers of color are underrep-
resented in the rare disease advocacy groups that have 
been so important in educating and providing resources 
to those newly diagnosed with a rare disease; 
Whereas groups like the Rare Disease Diversity Coalition, 
comprised of rare disease experts, health and diversity 
advocates, and industry leaders, are dedicated to devel-
oping and implementing strategies to reduce inequalities 
and are working to improve the quality and accessibility 
of care by identifying the most pressing problems, and 
most promising solutions, in areas that include— 
(1) delays in the diagnosis and treatment of rare 
diseases; 
(2) research and clinical studies; 
(3) education and engagement of providers, patients, 
and nursing staff; and 
(4) public policy; and 
Whereas continued education of policymakers on the impor-
tance of addressing racial disparities is needed: Now, 
therefore, be it 
Resolved, That the House of Representatives— 
VerDate Sep 11 2014 
05:17 Apr 07, 2022
Jkt 029200
PO 00000
Frm 00004
Fmt 6652
Sfmt 6201
E:\BILLS\HR948.IH
HR948
pbinns on DSKJLVW7X2PROD with BILLS
•HRES 948 IH 
(1) recognizes the importance of decreasing 
rare diseases among all populations, especially 
among people of color; 
(2) recognizes the unique factors that impact 
people of color, including racism and historic bias 
and its lingering disparate social, economic, and 
health effects on these communities; 
(3) recognizes the necessity of spreading aware-
ness and improving patient and provider education 
and engagement as a means to reduce delays in rare 
disease diagnosis and improving rare disease treat-
ment; 
(4) supports continued research and develop-
ment of drugs for rare diseases to address unmet 
medical needs of patients with rare diseases; and 
(5) supports the designation of ‘‘Rare Disease 
Day’’. 
Æ 
VerDate Sep 11 2014 
05:17 Apr 07, 2022
Jkt 029200
PO 00000
Frm 00005
Fmt 6652
Sfmt 6301
E:\BILLS\HR948.IH
HR948
pbinns on DSKJLVW7X2PROD with BILLS