[Congressional Record Volume 168, Number 36 (Monday, February 28, 2022)]
[Extensions of Remarks]
[Page E190]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




   IN RECOGNITION OF RARE DISEASE DAY AND THE RARE DISEASE DIVERSITY 
                               COALITION

                                 ______
                                 

                           HON. BOBBY L. RUSH

                              of illinois

                    in the house of representatives

                       Monday, February 28, 2022

  Mr. RUSH. Madam Speaker, I rise today in recognition of Rare Disease 
Day to stand with the courageous women and men who have been diagnosed 
with rare diseases and honor those who have lost their battle to these 
terrible illnesses.
  An estimated 1 in 10 Americans are afflicted with rare diseases, and 
people of color suffer disproportionately from these illnesses. Despite 
their great overall number, rare disease patients are the ``orphans'' 
of the healthcare systems, often denied diagnosis, treatment, and the 
benefits of research. Due to the low prevalence of each disease, 
medical expertise is rare, knowledge is scarce, care offerings 
inadequate, and research limited.
  We applaud the advocates, medical professionals, and caregivers who 
dedicate their lives to providing resources to those diagnosed with 
rare diseases. One such advocate is the Rare Disease Diversity 
Coalition, an organization born out of a commitment to help address the 
extraordinary challenges faced by rare disease patients of color and a 
dedication to serve as a catalyst for progress. The RDDC's depth and 
breadth of expertise come from the diversity of the over 50 coalition 
members and affiliates; which include the Asian-Pacific Islander 
American Health Forum, EveryLife Foundation, Health Equity 
Collaborative, MANA, A National Latina Organization, National Black 
Nurses Association, National Hispanic Medical Association, National 
Medical Association, Patient Advocate Foundation, and the Black Women's 
Health Imperative. This coalition can help society seize the momentum 
for change on racial inequities and drive progress on the continuing 
struggles regarding health equity and rare diseases. Last fall, the 
RDDC hosted the RARE Health Equity Summit Fall in partnership with 
Global Genes. This Summit brought together stakeholders from the rare 
disease community to discuss persistent gaps in diagnostic challenges 
for historically underserved and underrepresented patient communities 
and to align strategies to address health inequities of the rare 
disease community.
  It is up to us to continue fighting for cures and ensure that every 
American, especially those of color, has access to the quality care 
they need. Still, our Nation has a long way to go before rare diseases 
no longer threaten American lives and devastate communities of color.
  As we observe Rare Disease Day, I ask my colleagues in Congress to 
stand with me in support of real and significant progress with rare 
diseases; to unite in supporting treatments and breakthroughs with rare 
diseases; to ensure that more people have access to quality, affordable 
health care; and to lifting the inequitable health burden that falls on 
communities of color. We must commit to ending rare diseases and 
improving the lives of all those affected by these illnesses.

                          ____________________