CME Presentations

Rare Disease CME

Presentations

Speakers

  • Nicholas Ah Mew, MD

    Nicholas Ah Mew, MD

    Nicholas Ah Mew, MD

    Director, Inherited Metabolic Disorders Program

    Nicholas Ah Mew, MD, is Director of the Inherited Metabolic Disorders Program at Children’s National Hospital and is Associate Professor of Pediatrics at George Washington University. He is a board-certified clinical geneticist in Washington, DC, and a clinical biochemical geneticist whose primary research interests include urea cycle disorders, organic acidemias, and other disorders of ammonia metabolism. Dr. Ah Mew is the principal investigator (PI) or co-PI of several projects funded through the National Institutes of Health and Patient-Centered Outcomes Research Institute. Furthermore, he has authored multiple publications and book chapters on genetics and metabolism and has lectured internationally on these topics.

    Session Appearances

    Rare Disease Diagnosis and Testing Strategies

  • Sarah Viall, MSN

    Sarah Viall, MSN

    Sarah Viall, MSN

    Program Director, Clinical Metabolic Genetics

    Sarah Viall, MSN, graduated from Yale University School of Nursing in 2012 and started her career in the Division of Genetics & Metabolism at Children's National Hospital. She specialized in the follow-up of infants and children with conditions detected by newborn screening. Sarah was the Division's Director of Newborn Screening until April 2020, when Sarah moved to Portland, Oregon to serve as the Program Director for Clinical Metabolic Genetics at Oregon Health and Science University (OSHU). In addition, she is a Nurse Educator for the Northwest Newborn Screening Program, and she helps to manage the lysosomal storage disorder program at OSHU. Sarah’s main areas of interest are newborn screening, lysosomal storage disorders, and phenylketonuria.

    Session Appearances

    Rare Disease Diagnosis and Testing Strategies

  • Debra Regier, MD, PhD

    Debra Regier, MD, PhD

    Debra Regier, MD, PhD

    Medical Director

    Debra Regier, MD, PhD, is the Medical Director and Director of Genetic and Genomic Education at Children's National and Program Director for the Children’s National medical genetics training program. Her patient population includes general genetics, palliative care/genetics, and metabolic diseases. Due to her drive to improve care for patients with Rare Diseases, she has worked to advance education in multiple facets. She has served as the Education Coordinator and Principal Investigator for the Rare Disease Clinical Research Scholar's Program. She serves on the Board of Directors for the Society of Inherited Metabolic Disorders. In her free time, she serves as the genetics and rare disease expert for the Make-A-Wish national medical advisory council.

    Session Appearances

    Rare Disease Diagnosis and Testing Strategies

    Creation of a Patient-centered, Medical Rare Disease Home

    Support Mechanisms for Providers of Rare Disease Care

    Culturally Competent Care in your Community

  • Maura Carroll, MD

    Maura Carroll, MD

    Maura Carroll, MD

    Primary Care Pediatrician

    Maura Carroll, MD, is a primary care pediatrician working in Ashburn and Chantilly, Virginia. Dr. Carroll currently works at Ashburn Pediatrics, and she has completed her residency at Georgetown University Hospital. She is interested in genetics and neurology, caring for many patients with complex medical problems. Dr. Carroll has a strong belief in the concept of the “medical home” and tries to serve the community’s most complicated patients and families by providing many aspects of their care. She works with very supportive partners who have been willing to allow the office to stock specialty formulas, feeding tube equipment and some rehab equipment to keep their patients well-supplied. In her free time, Dr. Carroll enjoys being with her extended family, knitting, quilting and gardening.

    Session Appearances

    Rare Disease Diagnosis and Testing Strategies

  • Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG

    Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG

    Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG

    Attending Physician, Genetics and Metabolism

    Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG, is an attending physician in Genetics and Metabolism at Children’s National (Children’s National Rare Disease Institute) and an Assistant Professor of Pediatrics and Integrated Systems Biology at George Washington Medical School in Washington, DC. In addition, she is the Director for Adult Medicine at Children’s National Rare Disease Institute. Moreover, Dr. Chapman is the Co-Director of the Adult Mitochondrial Program at Children’s National. She specializes in taking care of all ages of individuals with metabolic and genetic disorders. Dr. Chapman’s clinic interests focus on mitochondrial diseases, metabolic disorders, and cardio-genetic diseases while her research interests are several metabolic pathways and protein complexes within them.

    Session Appearances

    Culturally Competent Care in your Community

  • Eduardo Fox, MD

    Eduardo Fox, MD

    Eduardo Fox, MD

    Pediatrician

    Eduardo Fox, MD, is a pediatrician at Children’s National Shaw Metro. He works in the Goldberg Center for Community Pediatric Health and serves as Medical Director for the Pediatric Health Network. Dr. Fox holds an academic position as Clinical Assistant Professor of Pediatrics at George Washington University School of Medicine & Health Sciences. His clinical and research interests include immigrant health, quality improvement, pediatric asthma care, and children with medical complexity. Dr. Fox has also assisted in the expansion of primary care telemedicine services, participated in and led practice quality improvement efforts, and contributed to medical home certification efforts. Prior to joining Children’s National, he was a pediatrician at Capital Area Pediatrics in Virginia.

    Session Appearances

    Culturally Competent Care in your Community

  • Danielle Starin, MS, RD, LD

    Danielle Starin, MS, RD, LD

    Danielle Starin, MS, RD, LD

    Research Nutritionist & Metabolic Dietitian

    Danielle Starin, MS, RD, LD, is a research nutritionist and metabolic dietitian in the Rare Disease Institute at Children’s National Hospital in Washington, DC. She holds a bachelor’s degree in Cell Biology and Molecular Genetics and a master’s degree in Nutrition and Food Science, both from the University of Maryland, College Park. Danielle completed her dietetic internship at the National Institutes of Health in Bethesda, Maryland. In addition to her clinical work, she is an active member of Genetic Metabolic Dietitians International. Danielle has served on advisory boards and as a consultant for multiple rare disease pharmaceutical and formula companies. Furthermore, she participates in multiple research studies on various inborn errors of metabolism.

    Session Appearances

    Culturally Competent Care in your Community

  • Leah Fleming, MD

    Leah Fleming, MD

    Leah Fleming, MD

    Clinical Genetics and Medical Biochemical Genetics

    Leah Fleming, MD, specializes in clinical genetics and medical biochemical genetics. She enjoys caring for children and adults with a wide range of genetics conditions and values the longitudinal relationships that come from following her patients with inborn errors of metabolism and other rare conditions over the years after their diagnosis. She works with a multidisciplinary team of geneticists, genetic counselors, nurses, and dieticians at the Idaho Elks Children’s Pavilion where is she can collaborate closely with other pediatric subspecialists. In her spare time, she enjoys teaching genetic counseling students at Boise State University, spending time with her friends, family and her dogs, and enjoying the beauty of Idaho.

    Session Appearances

    Culturally Competent Care in your Community

  • Deborah Bilder, MD

    Deborah Bilder, MD

    Deborah Bilder, MD

    Professor, Department of Psychiatry, Division of Child & Adolescent Psychiatry

    Deborah Bilder, MD, is a Professor in the Department of Psychiatry in the Division of Child & Adolescent Psychiatry at the University of Utah. She holds adjunct appointments in the departments of Pediatrics and Educational Psychology. Dr. Bilder completed the triple board residency program (Pediatrics, General Psychiatry, Child & Adolescent Psychiatry) at the University of Utah and maintains board certification in all three specialties. She is the Principal Investigator for the Utah Registry of Autism and Developmental Disabilities and co-Principal Investigator for the CDC’s Autism and Developmental Disabilities Monitoring Network Utah site. Her clinical expertise is in psychiatric assessment and treatment for individuals across the lifespan with severe neurodevelopmental disabilities.

    Session Appearances

    Creation of a Patient-centered, Medical Rare Disease Home

  • Jamie Fraser, MD, PhD, FACMG

    Jamie Fraser, MD, PhD, FACMG

    Jamie Fraser, MD, PhD, FACMG

    Director, Myelin Disorders Clinic

    Jamie Fraser, MD, PhD, FACMG, completed her medical and graduate training at the Medical University of South Carolina, where she studied neonatal brain injury in humans and in vivo models. Then, Dr. Fraser completed her pediatrics training at Children’s National Hospital in 2013 and medical genetics training at the National Institutes of Health in 2016. Currently, Dr. Fraser is the director of the Myelin Disorders clinic at Children's National. Her clinical and research interests focus on metabolic disorders, neurometabolic diseases, neuroprotection, leukodystrophies and leukoencephalopathies, and the development of new therapies to treat rare, complex disorders. Dr. Fraser’s goal is to better understand the pathogenesis of these diseases and target mechanisms to ultimately treat patients.

    Session Appearances

    Creation of a Patient-centered, Medical Rare Disease Home

  • Christine Maccia, MS, CGC

    Christine Maccia, MS, CGC

    Christine Maccia, MS, CGC

    Genetic Counselor

    Christine Maccia, MS, CGC, is currently a genetic counselor in the Rare Disease Institute at Children’s National Medical Center. She is also a part of the team for the Lysosomal Storage Disorders Program at Children’s National Medical Center. She sees general genetics patients but has a special interest in metabolic and lysosomal storage disorders. Additionally, Christine is interested in clinical research and trials, genetic therapies, and reproductive genetics. She is a recent graduate of the University of South Carolina Genetic Counseling Program.

    Session Appearances

    Creation of a Patient-centered, Medical Rare Disease Home

  • Jenifer Jones-Dees, MD

    Jenifer Jones-Dees, MD

    Jenifer Jones-Dees, MD

    Independent Pediatrician

    Jenifer Jones-Dees, MD, has joined the team at IMA Healthcare to be an Independent Pediatrician alongside her pediatric practice in the Midwest. She has a special interest in asthma and allergy, behavioral pediatrics, and care of the child with complex medical needs. In addition to her pediatric practice, Dr. Jones-Dees is the medical director for Infinite Skin Medical Spa and certified in adult hormone replacement therapy. She holds certification for several aesthetic procedures including laser skin resurfacing, laser hair removal and injections for both Botox and fillers. Furthermore, Dr. Jones-Dees supports the state Pediatric chapter by providing leadership with the roles of State Immunization Champion and State Early Hearing Detection and Intervention Champion.

    Session Appearances

    Creation of a Patient-centered, Medical Rare Disease Home

  • Carla Cheatham, MD, MA, PhD

    Carla Cheatham, MD, MA, PhD

    Carla Cheatham, MD, MA, PhD

    Assistant Professor

    Carla Cheatham, MD, MA, PhD, began her career in psychosocial services before working 10 years as an interfaith healthcare chaplain and bereavement coordinator. Dr. Cheatham is a national keynote speaker and consultant focusing on emotionally intelligent and resilient professionals and organizations. Moreover, she is a member of NHPCO’s Trauma-Informed End of Life Care Work Group, former Chair of NHPCOs Ethics Advisory Council, Adjunct Professor at Seminary of the Southwest, and Assistant Professor for University of Maryland’s MS in Palliative Care. Dr. Cheatham publishes books and videos about healthy leadership and organizations, resilience, communication, trauma-informed care, post-traumatic growth, grief, service recovery, emotionally competent professionals and teams, and more.

    Session Appearances

    Support Mechanisms for Providers of Rare Disease Care

CME Information

   
PIM LogoPQH Logo

Rare Disease for Primary Care Providers: A Short Course to Equip and Serve Those Providing Care

Jointly provided by Postgraduate Institute for Medicine, PlatformQ Health Education, LLC, and Children’s National Hospital
working in collaboration with the National Organization for Rare Disorders (NORD).

ACKNOWLEDGEMENT

This activity is supported by an educational grant from the Chan Zuckerberg Initiative.

TUITION

Complimentary
JointlyAccreditedProvider Logo

JOINT ACCREDITATION STATEMENT

In support of improving patient care, this activity has been planned and implemented by the Postgraduate Institute for Medicine, PlatformQ Health Education, LLC, and Children’s National Hospital. Postgraduate Institute for Medicine 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.

LIVE CREDIT DESIGNATION STATEMENTS – July 27, 2022

PHYSICIAN CREDIT DESIGNATION STATEMENT

The Postgraduate Institute for Medicine designates this live activity for a maximum of 2.0 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

CONTINUING DIETICIAN EDUCATION

This program offers 2 CPEUs for dieticians.

INTERPROFESSIONAL CONTINUING EDUCATION

IPCE Logo This activity was planned by and for the healthcare team, and learners will receive 2 Interprofessional Continuing Education (IPCE) credit for learning and change.

ENDURING CREDIT DESIGNATION STATEMENTS – July 27, 2022 to July 27, 2024

PHYSICIAN CREDIT DESIGNATION STATEMENT

The Postgraduate Institute for Medicine designates this enduring material for a maximum of 4 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

CONTINUING DIETICIAN EDUCATION

This program offers 4 CPEUs for dieticians.

INTERPROFESSIONAL CONTINUING EDUCATION

IPCE Logo This activity was planned by and for the healthcare team, and learners will receive 4 Interprofessional Continuing Education (IPCE) credit for learning and change.

DATE OF RELEASE/EXPIRATION


Live Activity
Wednesday, July 27, 2022
2:00-3:00 pm ET: Creation of a Patient-centered, Medical Rare Disease Home
3:00-4:00 pm ET: Support Mechanisms for Providers of Rare Disease Care

Enduring Material
The enduring material will be available from July 27, 2022 to July 27, 2024.

  • Rare Disease Diagnosis and Testing Strategies
  • Culturally Competent Care in your Community
  • Creation of a Patient-centered, Medical Rare Disease Home
  • Support Mechanisms for Providers of Rare Disease Care

    • LEARNING OBJECTIVES

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

  • Increase knowledge of genetic and non-genetic testing for the patient undergoing a diagnostic odyssey
  • Understand the role of genetic testing in the diagnostic process for rare disease patients
  • Communicate with rare disease families in a way that shows that they have access to a medical home that understands their unique medical and psychosocial needs
  • Understand unique needs of underrepresented minority populations in rare disease care
  • Accept that every care provider can feel emotions of insufficiency, sadness, or frustration when managing rare disease patients

    • TARGET AUDIENCE

    The intended audience for this activity are physicians, advanced practice providers (NPs and PAs), pharmacists, dietitians, and other health care providers who care for rare disease patients.

    ESTIMATED TIME TO COMPLETE

    Live activity – 2 hours
    Enduring activity – 4 hours

    METHOD OF PARTICIPATION

    There are no fees to participate in this activity. To participate in the activity, go to www.ClinicalSeriesLive.com. To receive credit, participants must (1) read the target audience, learning objectives, and disclosure statements, (2) complete the educational activity online, and (3) complete the post-test and activity evaluation. To receive AMA PRA Category 1 Credit™, participants must receive a minimum score of 70% on the post-test.

    HARDWARE/SOFTWARE REQUIREMENTS

    Participants will need a computer with a recent version of Adobe Flash installed, as well as an internet connection sufficient for streaming media.

    DISCLOSURE OF CONFLICTS OF INTEREST

    Postgraduate Institute for Medicine (PIM) requires faculty, planners, and others in control of educational content to disclose all their financial relationships with ineligible companies. All identified conflicts of interest (COI) are thoroughly vetted and mitigated according to PIM policy. PIM is committed to providing its learners with high quality accredited continuing education activities and related materials that promote improvements or quality in healthcare and not a specific proprietary business interest of an ineligible company.

    The faculty reported the following relevant financial relationships with ineligible entities related to the educational content of this CE activity:


    Name of Faculty or Presenter Reported Financial Relationship
    Debra Regier, MD PhD
    Medical Director
    Children’s National Hospital
    		 Has nothing to disclose.
    Sarah Viall, MSN
    Assistant Professor, Department of Molecular and Medical Genetics
    Program Director, Clinical Metabolic Genetics
    Oregon Health & Science University (OHSU)     		Has nothing to disclose.
    Maura Katharine Carroll, MD
    Physician, Ashburn Pediatrics
    Loudon Medical Group     		Has nothing to disclose.
    Nicholas Ah Mew, MD
    Director, Inherited Metabolic Disorders Program, Rare Disease Institute, Children’s National Hospital
    Associate Professor of Pediatrics, The George Washington University
    		 Grant/Research Support: Recordati Rare Diseases, Aeglea Biotherapeutics, Hemoshear Therapeutics
    Consultant/Advisory Board: Satellite Bio, Ultragenyx, Unicyte Bio
    Leah R. Fleming, MD
    St Luke’s Health System
    Boise, ID     		Has nothing to disclose.
    Kimberly A. Chapman, MD, PhD
    Director, Adult Medicine
    Children's National Rare Disease Institute     		Other: HemoShear Therapeutics provides my employer a portion of my salary to reimburse for the time I spend as a national PI in the HST5040 clinical trials
    Eduardo Fox, MD
    Pediatrician, Primary Care
    Medical Director, Pediatric Health Network
    Assistant Clinical Professor
    Children’s National Hospital
    George Washington University School of Medicine and Health Sciences     		Has nothing to disclose.
    Danielle Starin, MS, RD
    Metabolic Dietitian
    Children’s National Hospital, Rare Disease Institute     		Speakers Bureau/Honoraria for non-CME: Ultragenyx, Biomarin
    Consultant/Advisory Board: Aeglea, Hemoshear
    Deborah Bilder, MD
    Professor, Department of Psychiatry
    Division of Child & Adolescent Psychiatry
    University of Utah
    Huntsman Mental Health Institute Neurobehavior HOME Program     		Employee Owner: Resero, LLC (owner)
    Consultant/Advisory Board: Biomarin Pharmaceuticals (Phase 3 Clinical Trial Steering Committee Member, consultant), Synlogic Therapeutics (consultant), Encoded Therapeutics (consultant), Taysha Gx (Scientific Advisory Board Member)
    Jaime L. Fraser, MD, PhD
    Director, Myelin Disorders Program
    Director, Fetal Genetics
    Assistant Professor of Pediatrics
    Rare Disease Institute
    Children's National Hospital
    Department of Pediatrics
    George Washington University     		Grant Research/Support: Travere Therapeutics: Clinical Trial Site
    Jenifer Jones-Dees, MD, FAAP
    Pediatrician
    IMA Healthcare     		Has nothing to disclose.
    Christine Maccia, MS, CGC
    Genetic Counselor
    Children’s National Hospital     		Has nothing to disclose.
    Carla Cheatham, MD
    Lead Trainer and Consultant
    Carla Cheatham Consulting Group, LLC     		Has nothing to disclose.

    The PIM planners and others have nothing to disclose. The PlatformQ Health Education, LLC and Children’s National Hospital planners and others have nothing to disclose.

    DISCLOSURE OF UNAPPROVED/OFF LABEL USE:

    This educational activity may contain discussion of published and/or investigational uses of agents that are not indicated by the FDA. The planners of this activity do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the planners. Please refer to the official prescribing information for each product for discussion of approved indications, contraindications, and warnings.

    DISCLAIMER:

    Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any procedures, medications, or other courses of diagnosis or treatment discussed or suggested in this activity should not be used by clinicians without evaluation of their patient's conditions and possible contraindications and/or dangers in use, review of any applicable manufacturer's product information, and comparison with recommendations of other authorities.

    CONTACT INFORMATION

    Accreditation Support:
    If you have questions regarding the certification of this activity, please contact PIM via email at inquiries@pimed.com.

    Technical Support:
    For any technical issues or issues with your CME Certificate, please contact ClinicalSeriesLive.com at 877-394-1306 or at Support@ClinicalSeriesLive.com.