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IN RECOGNITION OF RARE DISEASE DAY AND THE RARE DISEASE DIVERSITY
COALITION
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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.
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SOURCE: Congressional Record Vol. 168, No. 36
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