[Congressional Record Volume 168, Number 200 (Thursday, December 22, 2022)]
[Extensions of Remarks]
[Pages E1337-E1338]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 INTRODUCTION OF THE RARE DISEASE ADVANCEMENT, RESEARCH, AND EDUCATION 
                               (RARE) ACT

                                  _____
                                 

                           HON. ANDRE CARSON

                               of indiana

                    in the house of representatives

                      Thursday, December 22, 2022

  Mr. CARSON. Madam Speaker, I am pleased to reintroduce the Rare 
disease Advancement, Research, and Education (RARE) Act. This important 
legislation will address many of the issues facing rare disease 
patients and families. This legislation will make a meaningful 
difference in the lives of those struggling with rare diseases by using 
increased research to help provide more accurate diagnoses and 
increased treatment options.
  During my service in Congress, I have been honored to represent and 
meet with many brave Hoosier families that are struggling with rare 
diseases. I have been moved by their courage. Their strength in midst 
of trying conditions is not only inspiring, but also instructive. They 
have educated me and my colleagues about the necessity of increased 
research and rare disease surveillance in order to provide more 
treatment options and better diagnoses.
  Nearly one in ten Americans live with one or more of the roughly 
7,000 known rare diseases. These largely inherited diseases--defined as 
affecting 200,000 or fewer people--often lack substantive research 
investments and treatment options. In particular, African-Americans are 
especially vulnerable to certain rare diseases, including Sickle cell 
disease and beta-thalassemia. Specifically, the blood disorder Sickle 
cell disease affects 73 out of every 1,000 African American babies 
versus only three out of every 1,000 Caucasian babies.
  While rare diseases cross the medical spectrum, individuals with rare 
diseases face some common challenges. Largely due to their limited 
patient population size, these individuals may have difficulty 
obtaining an accurate diagnosis, finding physicians or treatment 
centers with expertise in their disease, and ultimately finding 
appropriate treatment options and cures. Frighteningly, roughly 90 
percent of rare diseases still lack a treatment approved by the U.S. 
Food and Drug Administration (FDA). While over 450 drugs have been 
approved for the treatment of rare diseases, millions of Americans who 
are suffering from a rare disease have no approved treatment options.
  Past Congressional action has helped support research at NIH and CDC, 
supported in part by the bipartisan appropriations letter I lead each 
year--signed by over 220 House members--in support of increased NIH 
funding. However, much more work needs to be done to help these 
agencies improve rare disease awareness, education, research, 
surveillance, diagnosis, and treatment. This is why the RARE Act is so 
important. It will expand the ability of the National Institutes of 
Health (NIH) and Centers for Diseases Control and Prevention (CDC) to 
study rare diseases by improving treatment, research, and diagnostics 
of rare diseases through new and existing programs. I am proud to 
introduce the RARE Act to help address the many unique challenges 
facing the rare disease patient community.
  The RARE Act would provide an important step forward by addressing 
some of the common challenges faced by rare disease patients and 
improving rare disease treatment, research, and diagnostics. The RARE 
Act would expand an existing and successful program at NIH: the Rare 
Diseases Clinical Research Network (RDCRN). The RDCRN's 21 research 
``centers of excellence'' support the research and clinical trials of 
over 190 rare diseases and increase the availability of rare disease 
information to doctors and patients.
  The RARE Act would also fill critical gaps in our healthcare system 
by improving coordination, surveillance, and awareness of rare 
diseases. For example, the RARE Act would require the Centers for 
Disease Control (CDC) to create a National Rare Disease or Condition 
Surveillance System. This formalized infrastructure would track rare 
disease data and help researchers to understand commonalities between 
diseases and possible treatments, ultimately helping patients like 
Derrian to find better treatments. The RARE Act would also require the 
Agency for Healthcare Research and Quality (AHRQ) to expand and 
intensify its work to ensure that health professionals are aware of 
rare disease diagnoses and treatments, leading to fewer misdiagnoses 
like Jocelyn experienced. The RARE Act would also mandate an updated 
report on rare disease efforts from the National Academies of Sciences, 
Engineering, and Medicine to ensure that Congress has the best tools 
possible to address these issues.
  Madam Speaker, I hope my colleagues will join me in supporting this 
bill to help combat rare diseases. I urge the House to support this 
bill.

[[Page E1338]]

 RECOGNIZING PAUL WEBSTER FOR 50 YEARS SERVING WITH HOUSING AND URBAN 
                              DEVELOPMENT

                                  _____
                                 

                        HON. GERALD E. CONNOLLY

                              of virginia

                    in the house of representatives

                      Thursday, December 22, 2022

  Mr. CONNOLLY. Madam Speaker, it is my honor to recognize a leading 
figure in the practice of community and economic development, Mr. Paul 
Webster.
  Mr. Webster serves as the Director of the Financial Management 
Division in the Office of Community Planning and Development for the 
U.S. Department of Housing and Urban Development. Mr. Webster's 
commitment to public service is unparalleled, his five-decade-long 
career focused on creating resilient communities, suitable living 
environments, and economic opportunities for low- and moderate-income 
persons and families.
  Mr. Webster joined the Department in 1972 and has served as Director 
since 1983. In this role, Mr. Webster oversees the Section 108 loan 
guarantee program, a transformational program and resource for low-
income communities, including funding for critical economic development 
projects and facilitation of affordable housing solutions that would 
otherwise not be possible.
  He spearheaded the expansion of the Section 108 program. Over the 
course of his career, Mr. Webster has overseen an unprecedented 2,000 
loan guarantee commitments with a total value close to $10 billion. 
These numbers underscore his work to provide the much-needed resources 
that revitalize American communities and ensure everyone has a chance 
to succeed.
  Mr. Webster also championed legislation that established the Economic 
Development Initiative (EDI), which provided grant funds to support and 
enhance the use of Section 108 loan guarantees and the subsequent 
Brownfields EDI to help address environmental cleanup efforts, 
returning contaminated property to sustainable use. His expertise also 
extended to long-term disaster recovery work and neighborhood 
stabilization activities targeted at addressing the effects of 
abandoned and foreclosed housing.
  He is one of the leading experts on financial management and is happy 
to provide guidance and advice to individuals, organizations, and 
federal, state, and local partners for the Department. Equally 
important, Mr. Webster has been and continues to be a mentor to the 
next generation of community development and financial management 
professionals, reflected in the esteem of his colleagues, staff, and 
external partners.
  Madam Speaker, I ask that my colleagues join me in honoring this 
remarkable public servant, whose expertise, tenacity, and creativity in 
economic and community development has helped to transform hundreds of 
communities for the better. Paul Webster has tirelessly dedicated 
himself to making life better for countless Americans. I hope his 
continuing legacy inspires us all to renew our commitments to serving 
our communities.

                          ____________________