The Olivia’s Light Pediatric Rare Disease Conference

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™ (10.50 hours), AAPA (10.50 hours), ANCC Contact Hours (10.50 hours), Hours of Participation (10.50 hours), IPCE (10.50 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

Physicians
UVA Health Continuing Education designates this live activity for a maximum of 10.5 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 10.5 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 10.5 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 10.5 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 10.5 Interprofessional Continuing Education (IPCE) credit for learning and change.