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Olivia’s Light Pediatric Rare Disease Conference: Keeping Genetics Top of Mind


Olivia’s Light Pediatric Rare Disease Conference: Keeping Genetics Top of Mind Banner

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Add to Calendar Olivia’s Light Pediatric Rare Disease Conference: Keeping Genetics Top of Mind 6/9/2025 7:00:00 AM 6/10/2025 2:00:00 PM America/New_York For More Details: https://UVA.cloud-cme.com/oliviaslight2025 Description: The Olivia's Light Pediatric Rare Disease Conference aims to improve patient care for children and families impacted by a rare disease. The conference will highlight different aspects of the rare disease journey, with an emphasis on rapid broad genetic testing, particularly whole exome and whole genome sequencing. The conference will also highlight other components of patient care, including, early recognition of genet... UVA Student Health & Wellness false MM/DD/YYYY


Overview

The Olivia's Light Pediatric Rare Disease Conference aims to improve patient care for children and families impacted by a rare disease. The conference will highlight different aspects of the rare disease journey, with an emphasis on rapid broad genetic testing, particularly whole exome and whole genome sequencing. The conference will also highlight other components of patient care, including, early recognition of genetic conditions, a novel pathway to access broad genetic testing, ethical considerations and communication strategies in consultation, facilitating shared decision-making, community outreach and education, as well as, a look into the gaps and needs of patients and families.

What sets this conference apart is its focus on the often-underrepresented voices of children and families affected by a rare disease.  Furthermore, the two-day event will provide a collaborative and interactive experience between leading experts in pediatrics, parents and industry professionals. This will create a welcoming environment for sharing insights and experiences. Olivia’s Light Pediatric Rare Disease Conference seeks to significantly impact the future of pediatric healthcare.

Learn more about Olivia's Light


Date & Location
Monday, June 9, 2025, 7:00 AM - Tuesday, June 10, 2025, 2:00 PM EST, UVA Student Health & Wellness, Charlottesville, VA

Target Audience
Specialties - Genetic Counsler, Genetics, Neonatal-Perinatal Medicine, Neonatology , Neurology , OBGYN, Pediatrics
Professions - Dietitian, Nurse, Nurse Practitioner, Occupational Therapist, Other, Physical Therapist, Physician, Physician Associate, Psychological Therapist, Respiratory Therapist, Social Worker

Objectives

At the conclusion of this activity, learners will be able to:


  1. Describe the diagnostic odyssey for families of children with undiagnosed genetic conditions.
  2. Describe the evidence for the need of rapid genetic testing in acute setting.
  3. Identify the impact of rapid testing on patient care: where both positive and negative results matter.
  4. Identify a novel pathway to access whole exome sequencing
  5. Identify key prenatal phenotypes and neonatal presentations that may indicate underlying genetic disorders.
  6. Apply comprehensive imaging techniques to characterize phenotypes and achieve early diagnosis of genetic conditions.
  7. Implement shared decision-making from multiple lenses: contrasting parent and provider perspectives
  8. Define ethical considerations related to prenatal/neonatal consultations
  9. Describe the development of a novel clinical telehealth model providing behavioral interventions and caregiver training for individuals with fragile X syndrome (FXS)
  10. Identify current drug approvals for rare pediatric genetic diseases
  11. Describe emerging treatment options for rare disease including gene therapies, enzyme replacement therapies for rare neurogenetic disorders

Credits
AMA PRA Category 1 Credits™ (12.25 hours), AAPA (12.25 hours), ANCC Contact Hours (12.25 hours), Hours of Participation (12.25 hours), IPCE (12.25 hours)

Registration

Participant Rates: 

Physician or PhD $275.00
Other HCP/Trainee $140.00
Parents or Advocates $99.00 
Industry or Government $275.00

Please note that Genetic Counselors will need to apply for their own continuing education credits within 90 days after the event. For more information visit Continuing Education Unit (CEU) Information and research Category 2 or reach out to Kara Watts at [email protected]


Additional Information

Cancellation Policy

Cancellation requests received in writing no less than 30 days before the course will be refunded, less a 20% administrative fee. No refunds will be provided for cancellation requests received within 30 days or for registration fees of less than $50.  Please send cancellation requests [email protected].

 

UVA Health Continuing Education reserves the right to cancel CE activities if necessary.  In this case, the entire registration fee will be refunded.  All other expenses incurred in conjunction with this CE activity are the sole responsibility of the participant.

 

Accessibility Statement
 
UVACE is committed to ensuring equal access to educational opportunities for individuals with disabilities, in compliance with the Americans with Disabilities Act of 1990 (ADA), as amended, and Section 504 of the Rehabilitation Act of 1973 (Section 504), as well as other applicable state and local laws and University policy. Individuals with disabilities are entitled to reasonable accommodations to ensure their participation in courses. Please note that some of the course venues at UVA are registered historic properties and may not be fully ADA accessible. If you have needs that require special accommodation, including dietary concerns, please email [email protected].  All requests must be received 30 days prior to the course start date.



Accreditation

Joint Accreditation Logo

In support of improving patient care, the University of Virginia School of Medicine and School of Nursing 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.

Physicians
UVA Health Continuing Education designates this live activity for a maximum of 12.25 AMA PRA Category 1 Credits.TM   Physicians should claim only the credit commensurate with the extent of their participation in the activity

Nurses
UVA Health Continuing Education awards up to 12.25 contact hour(s) for nurses who participate in this educational activity and complete the post activity evaluation.

Hours of Participation
UVA Health Continuing Education awards 12.25 hours of participation (consistent with the designated number of AMA PRA Category 1 Credit(s)TM  or ANCC contact hours) to a participant who successfully completes this educational activity. UVA Health Continuing Education maintains a record of participation for six (6) years.

Physician Associates
 UVA Health Continuing Education has been authorized by the American Academy of PAs (AAPA) to award AAPA Category 1 CME credit for activities planned in accordance with AAPA CME Criteria.
This activity is designated for 12.25 AAPA Category 1 CME credits. PAs should only claim credit commensurate with the extent of their participation.

This activity was planned by and for the healthcare team, and learners will receive 12.25 Interprofessional Continuing Education (IPCE) credit for learning and change.

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Mitigation of Relevant Financial Relationships


UVA Health Continuing Education adheres to the to the Joint Accreditation Standards for Integrity and Independence in Accredited Continuing Education. All individuals in a position to control the content of a CE activity, including faculty, planners, reviewers, or others, are required to disclose all relevant financial relationships with ineligible entities (commercial interests). All relevant conflicts of interest will be mitigated prior to the commencement of the activity.

To view financial disclosures, select the faculty name below. 



Faculty Photos
Ricki S Carroll, MD
Skeletal Dysplasia and Palliative Care Pediatrician
Nemours Children's Hospital
Wilmington, DE
Faculty Photos
Bimal P Chaudhari, MD, MPH
Assistant Professor
Nationwide Children's Hospital
Columbus, OH
Faculty Photos
Michelle Curtin, DO
Associate Professor, Pediatrics - Developmental
Wake Forest University School of Medicine
Winston-Salem, NC
Paula Darradji, Nurse
University of Virginia
Charlottesville, VA
Faculty Photos
Julia Figueroa, BSN, RNC-MNN
University of Virginia
Charlottesville, VA
Jamie Fraser, MD
Faculty Photos
Jennifer Harmon, MD, PhD
Assistant Professor
Wake Forest University School of Medicine
Winston Salem, NC
Elizabeth Jalazo, MD
Faculty Photos
David Kaufman, MD
University of Virginia
Charlottesville, VA
Faculty Photos
Jenna King, Parent
Olivia’s Light; Co-Founder & President
Midlothian, VA
Faculty Photos
Paul Kruszka, MD
University of Virginia
Charlottesville, VA
Faculty Photos
Sarah M Lepore, NP
APP NICU Manager
UVA
CROZET, VA
Faculty Photos
Joy Miller, PNP
APP Manager
UVA Children's Hospital
Charlottesville, VA
Faculty Photos
Dmitriy Niyazov, MD
Associate Professor of Pediatrics, Medical Genetics
Duke University School of Medicine
Chapel Hill, NC
Faculty Photos
Anna Platt, MS
Licensed Certified Genetic Counselor
University of Virginia Health
Charlottesville, VA
Faculty Photos
Debra Reisinger, PhD
Pediatric Psychologist & Assistant Professor, Pediatrics
Cincinnati Children's Hospital Medical Center
Cincinnati , OH
Faculty Photos
amanda soroka, NP
Children's Hospital of The Kings Daughters
virginia beach, VA
Faculty Photos
Connie Williams, MD, PhD
Associate Professor, Pediatrics
McMaster University
Hamilton, ON,
Hamilton, Canada
Faculty Photos
Lisa Zuckerwise, MD
Director, Maternal-Fetal Medicine Program
UVA
Charlottesville, VA

Monday, June 9, 2025
Registration, Breakfast (provided), and Exhibits
7:00AM - 7:50AM

Welcome, Conference Overview & Goals, and Parent Testimony (CME)
8:00AM - 8:30AM
Jenna King, Parent

KEYNOTE: Exceptional Care without Exception: Ending Genetic Exceptionalism to Advance Child Health (CME)
8:30AM - 9:30AM
Bimal P Chaudhari, MD, MPH

Rapid Exome & Genome: Fast Diagnosis is Necessary to Improve Patient Care (CME)
9:30AM - 10:30AM
Dmitriy Niyazov, MD

Network Break/Exhibits
10:30AM - 11:00AM

Parent Testimony (CME)
11:00AM - 11:20AM
amanda soroka, NP

Shortening the Diagnostic Odyssey: Current and Genomic Testing on the Horizon (CME)
11:20AM - 12:20PM
Paul Kruszka, MD

The Expanding Role of Genetic Counselors and What it Means for Patients (CME)
12:20PM - 12:45PM
Anna Platt, MS

Lunch (provided) & Exhibits
12:45PM - 1:45PM

A Novel Pathway to Increase Whole Exome Sequencing Access for Pediatric Patients with Neurodevelopmental Disabilities (CME)
1:50PM - 2:50PM
Michelle Curtin, DO
Jennifer Harmon, MD, PhD

From Clinical Care to Community Outreach: A Framework for Increasing Access to Care in Individuals with Fragile X Syndrome and Other Rare Genetic Disorders (CME)
2:50PM - 3:50PM
Debra Reisinger, PhD

Early Recognition of Genetic Conditions: Prenatal and Neonatal Red Flags (CME)
3:50PM - 4:50PM
Jamie Fraser, MD

Networking Reception
4:50PM - 6:00PM

Tuesday, June 10, 2025
Registration, Breakfast (provided), and Exhibits
7:00AM - 7:45AM

Conference Overview & Today's Goals (CME) - Dr. Madhusmita Misra, UVA Dept of Pediatrics Chair
7:45AM - 8:00AM
Jenna King, Parent
David Kaufman, MD

PANEL: The Rare Disease Journey from the Diagnosis and Beyond: Insights from Veteran Nurses in the Trenches (CME)
8:00AM - 8:45AM
Paula Darradji, Nurse
Julia Figueroa, BSN, RNC-MNN
Joy Miller, PNP
Sarah M Lepore, NP (Moderator)

Small Populations, Big Breakthroughs: The Evolving Therapeutic Landscape for Rare Disease Patients (CME)
8:45AM - 9:45AM
Elizabeth Jalazo, MD

Network Break/Exhibits
9:45AM - 10:15AM

Facilitating Shared Decision Making in the Context of Rare Diagnoses and Uncertain Prognoses (CME)
10:15AM - 11:15AM
Connie Williams, MD, PhD

Teams, Technology and Families Changing Outcomes in Rare Diseases that were Formerly Considered "Lethal": Lessons Learned from Skeletal Dysplasia Patients (CME)
11:15AM - 12:15PM
Ricki S Carroll, MD

PANEL: The Weight of Our Words: Considerations in Prenatal/Neonatal Consultation (CME)
12:15PM - 1:30PM
Bimal P Chaudhari, MD, MPH
Jamie Fraser, MD
Connie Williams, MD, PhD (Moderator)
Lisa Zuckerwise, MD
Ricki S Carroll, MD

Adjourn with lunch provided to go
1:30PM - 1:35PM

EXHIBITOR REGISTRATION COMING SOON! 

Promotion and Exhibit Agreement 

W-9


Contact Us:
Kara Watts
UVA Health CE

Email: [email protected]

Exhibit at this Event

Exhibitor Packages

Exhibitor Package - Silver Exhibitor Paid by Credit Card Price: $2500.00
Includes:
  • Number of Exhibitor Badges: 1

Deadline for order commitment is 5/9/2025 11:59:00 PM.

Exhibitor Package - Silver Exhibitor Paid by Check/ACH $2,500 Price: $0.00
Includes:
  • Number of Exhibitor Badges: 1

Deadline for order commitment is 5/9/2025 11:59:00 PM.

Exhibitor Package - Platinum Exhibitor- Paid by Credit Card Price: $7500.00
Includes:
  • Number of Exhibitor Badges: 2

Deadline for order commitment is 5/9/2025 11:59:00 PM.

Exhibitor Package - Gold Exhibitor- Paid by Credit Card Price: $5000.00
Includes:
  • Number of Exhibitor Badges: 2

Deadline for order commitment is 5/9/2025 11:59:00 PM.

Exhibitor Package - Gold Exhibitor- Paid by Credit Card Price: $2500.00
Includes:
  • Number of Exhibitor Badges: 2

Deadline for order commitment is 5/9/2025 11:59:00 PM.

Exhibitor Package - Gold Exhibitor- Paid by Check or ACH $5,000 Price: $0.00
Includes:
  • Number of Exhibitor Badges: 2

Deadline for order commitment is 5/9/2025 11:59:00 PM.

Exhibitor Package - Exhibitor Package - Non-Profit Paid by Credit Card Price: $1000.00
Includes:
  • Number of Exhibitor Badges: 6

Deadline for order commitment is 5/9/2025 11:59:00 PM.

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