What is a rare disease?

A disease is considered “rare” if it affects fewer than 200,000 individuals in the US. The FDA states that over 7,000 rare diseases affect more than 30 million people in the U.S. Many rare conditions are life-threatening and most do not have treatments. Uncovering the genetic roots of rare diseases and using those insights to develop new treatments is an ongoing process. Unfortunately, a long and complex journey to diagnosis is not unique. Living with a rare disease impacts patients and their families and caregivers both physically and mentally.

These activities focus on the diagnostic odyssey, clinical manifestations and emerging therapies of rare diseases. New for 2022, following each Diagnostic Odyssey for Individuals With Rare Diseases webcast, we are releasing an accompanying podcast sharing the personal experience from the patient, family or caregiver perspective. These accredited podcasts provide an in-depth understanding of the challenges and barriers that patients and their caregivers face as they navigate the complexities of the health care system. We invite you to learn more and please give them a listen!

Live Activities

Title Credit Dates
The Diagnostic Odyssey for Individuals With Rare Diseases: Kaposiform Lymphangiomatosis and Other Lymphatic Conditions
    • 1.00 AAPC - Coders
    • 1.00 ACPE - Pharmacists
    • 1.00 ACPE - Pharmacy Technicians
    • 1.00 AMA - Physicians
    • 1.00 ANCC - Nurses
    • 1.00 APA - Psychologists
    • 1.00 ASWB - Social Workers
    • 1.00 Attendance - General Attendance
    • 1.00 CCMC - General - Case Managers
11/10/2022 - 1:00pm to 2:00pm

On-Demand Education

Title Credit
The Diagnostic Odyssey for Individuals With Rare Diseases: Kaposiform Lymphangiomatosis and Other Lymphatic Conditions
    • 1.00 ACPE - Pharmacists
    • 1.00 ACPE - Pharmacy Technicians
    • 1.00 AMA - Physicians
    • 1.00 ANCC - Nurses
    • 1.00 APA - Psychologists
    • 1.00 ASWB - Social Workers
    • 1.00 Attendance - General Attendance
    • 1.00 CCMC - General - Case Managers
The Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Caregiver, Lymphangiomatosis (Podcast)
    • 0.75 ACPE - Pharmacists
    • 0.75 ACPE - Pharmacy Technicians
    • 0.75 AMA - Physicians
    • 0.75 ANCC - Nurses
    • 0.75 APA - Psychologists
    • 0.75 ASWB - Social Workers
    • 0.75 Attendance - General Attendance
    • 0.75 CCMC - General - Case Managers
The Diagnostic Odyssey for Individuals With Rare Diseases: Achondroplasia and Other Causes of Disproportionate Short Stature
    • 1.00 ACPE - Pharmacists
    • 1.00 ACPE - Pharmacy Technicians
    • 1.00 AMA - Physicians
    • 1.00 ANCC - Nurses
    • 1.00 APA - Psychologists
    • 1.00 ASWB - Social Workers
    • 1.00 Attendance - General Attendance
    • 1.00 CCMC - General - Case Managers
The Diagnostic Odyssey for Individuals With Rare Diseases: Pompe Disease and Other Lysosomal Storage Diseases
    • 1.00 ACPE - Pharmacists
    • 1.00 ACPE - Pharmacy Technicians
    • 1.00 AMA - Physicians
    • 1.00 ANCC - Nurses
    • 1.00 APA - Psychologists
    • 1.00 ASWB - Social Workers
    • 1.00 Attendance - General Attendance
    • 1.00 CCMC - General - Case Managers
The Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Patient, Pompe Disease (Podcast)
    • 0.75 ACPE - Pharmacists
    • 0.75 ACPE - Pharmacy Technicians
    • 0.75 AMA - Physicians
    • 0.75 ANCC - Nurses
    • 0.75 APA - Psychologists
    • 0.75 ASWB - Social Workers
    • 0.75 Attendance - General Attendance
    • 0.75 CCMC - General - Case Managers
Systemic Mastocytosis: Diagnostic and Therapeutic Updates
    • 1.00 ACPE - Pharmacists
    • 1.00 ACPE - Pharmacy Technicians
    • 1.00 AMA - Physicians
    • 1.00 ANCC - Nurses
    • 1.00 Attendance - General Attendance
    • 1.00 CCMC - General - Case Managers
    • 1.00 CDR - Dietitians
The Diagnostic Odyssey for Individuals With Rare Diseases: Leukodystrophies
    • 1.00 ACPE - Pharmacists
    • 1.00 ACPE - Pharmacy Technicians
    • 1.00 AMA - Physicians
    • 1.00 ANCC - Nurses
    • 1.00 APA - Psychologists
    • 1.00 ASWB - Social Workers
    • 1.00 Attendance - General Attendance
    • 1.00 CCMC - General - Case Managers
The Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Caregiver, Leukodystrophies (Podcast)
    • 0.75 ACPE - Pharmacists
    • 0.75 ACPE - Pharmacy Technicians
    • 0.75 AMA - Physicians
    • 0.75 ANCC - Nurses
    • 0.75 APA - Psychologists
    • 0.75 ASWB - Social Workers
    • 0.75 Attendance - General Attendance
    • 0.75 CCMC - General - Case Managers
Systemic Lupus Erythematosus: Mainstays of Management and Advances in Treatment
    • 1.00 ACPE - Pharmacists
    • 1.00 ACPE - Pharmacy Technicians
    • 1.00 AMA - Physicians
    • 1.00 ANCC - Nurses
    • 1.00 APA - Psychologists
    • 1.00 ASWB - Social Workers
    • 1.00 Attendance - General Attendance
    • 1.00 CCMC - General - Case Managers
    • 1.00 CDR - Dietitians
Duchenne Muscular Dystrophy: Utilizing Personalized Treatments and Addressing Health
    • 1.00 ACPE - Pharmacists
    • 1.00 ACPE - Pharmacy Technicians
    • 1.00 AMA - Physicians
    • 1.00 ANCC - Nurses
    • 1.00 APA - Psychologists
    • 1.00 ASWB - Social Workers
    • 1.00 Attendance - General Attendance
    • 1.00 CCMC - General - Case Managers

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