The Systemic Impact of Rare and Complex Diseases
Course Description (for QB) Rare diseases affect 10% of the U.S. population but account for more than $1.2 trillion in annual healthcare costs (NIH NACTS, 2023). This is about one-fourth to one-third of overall U.S. healthcare costs (Tisdale, 2021). The systemic impact of rare diseases has robust burdens, affecting patients and families, healthcare systems, employment workforces, and socioeconomic and government sectors. One is not mutually likely to be medically gaslit when providers are trying to diagnose invisible complex and rare autoimmune conditions exclusive of the other. However, the true systemic impact of rare diseases is not fully known. Thus, this renders rare diseases largely invisible to those who do not suffer from them and to the overall systems impacted by them.
Course Description (for QB) Rare diseases affect 10% of the U.S. population but account for more than $1.2 trillion in annual healthcare costs (NIH NACTS, 2023). This is about one-fourth to one-third of overall U.S. healthcare costs (Tisdale, 2021). The systemic impact of rare diseases has robust burdens, affecting patients and families, healthcare systems, employment workforces, and socioeconomic and government sectors. One is not mutually likely to be medically gaslit when providers are trying to diagnose invisible complex and rare autoimmune conditions exclusive of the other. However, the true systemic impact of rare diseases is not fully known. Thus, this renders rare diseases largely invisible to those who do not suffer from them and to the overall systems impacted by them.
Accreditation Council for Continuing Medical Education
In support of improving patient care, Relias LLC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
Relias LLC designates this enduring activity for a maximum of 1.00 AMA PRA category 1 Credits™. Physicians should only claim credit commensurate with the extent of their participation in the activity.
American Nurses Credentialing Center
In support of improving patient care, Relias LLC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
Nurses will receive 1.00 Nursing Contact Hours after successfully completing this course.
Arkansas State Board of Nursing
Arkansas State Board Of Nursing Approved Continuing Education program (CEBroker Provider #50-290).
Nurses will receive 1.00 contact hours for participating in this course.
Bahamas Medical Council
Bahamas Medical Council (CEBroker Provider #50-290)
Physicians will receive 1.00 AMA PRA category 1 Credits™.
California Board of Registered Nursing
Provider approved by the California Board of Registered Nursing, CEP# 13791
Nurses will receive 1.00 contact hours for participating in this course.
District of Columbia Board of Nursing
District of Columbia Board of Nursing Approved Continuing Education program (CEBroker Provider #50-290).
Nurses will receive 1.00 contact hours for participating in this course.
Florida Board of Medicine
Florida Board of Medicine (CEBroker Provider #50-290)
Physicians will receive 1.00 AMA PRA category 1 Credits™.
Florida Board of Nursing
Florida Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Florida Board of Osteopathic Medicine
Florida Board of Osteopathic Medicine (CEBroker Provider #50-290)
Physicians will receive 1.00 AMA PRA category 1 Credits™.
Florida Physician Assistants
Florida Physician Assistants (CEBroker Provider #50-290)
Georgia Board of Nursing
Georgia Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Georgia Composite Medical Board - Physician Assistants
Georgia Composite Medical Board - Physician Assistants (CEBroker Provider #50-290)
Kansas State Board of Nursing
Kansas State Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Kentucky Board of Nursing
Kentucky Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Louisiana State Board of Medical Examiners
Louisiana State Board of Medical Examiners (CEBroker Provider #: 50-290)
Physicians will receive 1.00 AMA PRA category 1 Credits™.
Louisiana State Board Of Medical Examiners - Midwifery
Louisiana State Board Of Medical Examiners - Midwifery (CEBroker Provider #50-290)
Midwives will receive 1.00 contact hours for participating in this course.
Michigan Board of Medicine
Physicians will receive 1.00 AMA PRA category 1 Credits™.
Michigan Board of Nursing
Michigan Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Michigan Board of Osteopathic Medicine and Surgery
Michigan Board of Osteopathic Medicine and Surgery (CEBroker Provider #50-290)
Physicians will receive 1.00 AMA PRA category 1 Credits™.
Mississippi Board of Nursing
Mississippi Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Mississippi State Board of Medical Licensure
Mississippi State Board of Medical Licensure (CEBroker Provider #: 50-290)
Physicians will receive 1.00 AMA PRA category 1 Credits™.
New Hampshire Medical Society
New Hampshire Medical Society (CEBroker Provider #50-290)
Physicians will receive 1.00 AMA PRA category 1 Credits™.
New Mexico Board of Nursing
New Mexico Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
New Mexico Certified Nurse Midwives and Licensed Midwives
New Mexico Certified Nurse Midwives and Licensed Midwives (CEBroker Provider #50-290)
Midwives will receive 1.00 contact hours for participating in this course.
New Mexico Medical Board
Physicians will receive 1.00 AMA PRA category 1 Credits™.
North Dakota Board of Nursing
North Dakota Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Ohio State Medical Board
State Medical Board of Ohio (CEBroker Provider #: 50-290)
Physicians will receive 1.00 AMA PRA category 1 Credits™.
Oklahoma Board Of Medical Licensure And Supervision - Medical Doctors
Oklahoma Board Of Medical Licensure And Supervision - Medical Doctors (CEBroker Provider #50-290) Physicians will receive 1.00 AMA PRA category 1 Credits™.
Oklahoma Board Of Medical Licensure And Supervision - Physician Assistants
South Carolina Board of Medical Examiners
South Carolina Board of Medical Examiners (CEBroker Provider #50-290)
South Carolina Board of Nursing
South Carolina Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Tennessee Board Of Medical Examiners
Tennessee Board of Medical Examiners (CEBroker Provider #50-290)
Physicians will receive 1.00 AMA PRA category 1 Credits™
West Virginia Board of Registered Nursing
West Virginia Board of Registered Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Wyoming Board of Nursing
Wyoming Board of Nursing (CEBroker Provider #50-290)
Nurses will receive 1.00 contact hours for participating in this course.
Recall the definitions for rare, ultra-rare, orphan, and complex diseases.
Recognize how rare diseases impact patients (and their families) and multiple systems, focusing on the healthcare system.
Identify strategies for unmet healthcare system needs to improve the systemic impact of rare diseases.
Outline:
Overview
Introducing the Zebra
Key Takeaways
Patient Impact
Ariana
The Diagnostic Odyssey
The Never-Ending Story
Invisible
Systems Impact
Intersecting System Burdens
Key Takeaways
Strategies for Unmet Needs
Fixing a Broken Healthcare System
Concept Connection
Key Takeaways
Conclusion
Course Summary
Course Contributor
Resources
References
Shalla is a subject matter expert (SME)/writer for Relias. She completed her BSN and two undergraduate degrees with top honors from the University of Wisconsin-Madison. Shalla earned her dual MSN degrees from Johns Hopkins University with top honors. She also maintains her post-baccalaureate nurse educator certificate (NE-BC). Shalla’s tenure spans over 20 years of cross-functional leadership and direct clinical roles in healthcare, biopharma/biotech, government affairs, managed care/market access, nonprofit patient advocacy, and research. Her subject matter expertise is in rare, orphan, and complex diseases. Her sub-expertise is in immune-mediated diseases (rheumatology and immunology), genetics, neurology, hematology/oncology, several pediatric diseases, population/public health, and larger systemic healthcare affairs. Shalla is a published author with leading rare disease experts and a global speaker. She also sits on scientific, advocacy, and legislative advisory boards. She has led national advocacy and disease awareness campaigns, including speaking before congress, leading to the first-in-class rare disease biologic approval and investigative treatment protocols.
The target audience for this course is: Nurses; Physician Assistants; Physicians; in the following settings: Acute Care Facility.
Asynchronous/Online Distance Learning; please see certificate details for specifics on delivery format.
Relias has a grievance policy in place to facilitate reports of dissatisfaction. Relias will make every effort to resolve each grievance in a mutually satisfactory manner. In order to report a complaint or grievance please contact Relias.
If you require special accommodations to complete this module, please contact Relias Support by completing the web form (https://www.relias.com/help) or by using the chat functionality.
All courses offered by Relias, LLC are developed from a foundation of diversity, inclusiveness, and a multicultural perspective. Knowledge, values and awareness related to cultural competency are infused throughout the course content.
Reference herein to any specific commercial product, process, or service by trade name, trademark, service mark, manufacturer or otherwise does not constitute or imply any endorsement, recommendation, or favoring of, or affiliation with, Relias, LLC.
All characteristics and organizations referenced in the following training are fictional. Any resemblance to any actual organizations or persons living or dead, is purely coincidental.
To earn continuing education credit for this course you must achieve a passing score of 80% on the post-test and complete the course evaluation.
If you require special accommodations to complete this module, please contact Relias Customer Support here.
