Patient Cases

Living with and Managing Rare Diseases: Patient and Clinician Testimonials

0.50 Credits

This activity highlights:

A parent's perspective on the collaborative care of her young child with a rare disease, emphasizing the key role of the pediatrician in coordinating the child's treatment team to optimize outcomes
The self-reported journey of an adult patient with a rare disease that outlines the diagnostic and complex management challenges she and her primary care physician and integrated treatment team have confronted
The self-reported journey of an older adult patient with a rare disease that highlights transitions of care and the importance of including the patient as a partner in care

Specific Learning Objectives

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

Recognize the importance of open communication among patients with rare diseases, their families, and their clinicians
Offer information and appropriate resources to patients living with rare diseases

Pediatric Patient

Dorota A. Szczepaniak, MD
Associate Professor of Clinical Pediatrics
Section Director of General and Community Pediatrics
Department of Pediatric Education
Indiana University School of Medicine
Associate Professor of Clinical Pediatrics
Department of Pediatrics
Riley Hospital for Children at IU Health
Indiana University School of Medicine
Indianapolis, IN

Disclosures
Dr Szczepaniak has nothing to disclose.

Becky Parker
Advocate for patients with osteogenesis imperfecta
Zionsville, IN

Disclosures
Ms Parker has nothing to disclose.

Adult Patient

Elizabeth A. Nguyen, RN
Chief Executive Officer
Worldwide Syringomyelia & Chiari Task Force Inc.
Lawrenceville, GA

Disclosures
Ms Nguyen serves as chief executive officer of Worldwide Syringomyelia & Chiari Task Force Inc., a 501(c)(3) charity. She holds or has held intellectual property/patents for Worldwide Syringomyelia & Chiari Task Force Inc. and the Syringomyelia Model of Care/Rare Disease Model of Care Template. Worldwide Syringomyelia & Chiari Task Force Inc. is a member of the National Organization for Rare Disorders (NORD). Ms Nguyen discloses a relationship with NORD. She volunteers for NORD as the Georgia Ambassador for Rare Disorders. Ms Nguyen’s spouse is an employee of Southside Medical Center. Her spouse serves or has served as an officer for Worldwide Syringomyelia & Chiari Task Force Inc. Her spouse has or has had a relationship with NORD.

Jeffrey Vrieland, MD
Department of Family Medicine
Medical College of Georgia
Augusta, GA

Disclosures
Dr Vrieland has nothing to disclose.

Older Adult Patient

Raymond W. Malles
Advocate for patients with myelodysplastic syndromes
Warminster, PA

Disclosures
Mr Malles and his spouse, Prudence, serve or have served as interviewees for Liberating Research, for which honoraria have been received.

The program is accredited by the University of Cincinnati, the University of Cincinnati College of Nursing, and the American Academy of Family Physicians.

Target Audience

Any HCP involved in providing primary care for patients with rare diseases, including physicians, nurse practitioners, nurses, physician assistants, and pharmacists

Accreditation Statement

University of Cincinnati
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of the University of Cincinnati and Health and Wellness Education Partners (HWeP).

The University of Cincinnati is accredited by the ACCME to provide continuing medical education for physicians.

Physicians | The University of Cincinnati designates this activity for a maximum of 6 AMA PRA Category 1 Credits^TM. Physicians should claim only the credits commensurate with the extent of their participation in the activity.

Learner Assurance Statement
The University of Cincinnati is committed to resolving all conflicts of interest issues that could arise as a result of prospective faculty members' significant relationships with drug or device manufacturer(s). The University of Cincinnati is committed to retaining only those speakers with financial interests that can be reconciled with the goals and educational integrity of the CME activity.

Disclaimer Statement
The opinions expressed during the activity are those of the faculty and do not necessarily represent the views of the University of Cincinnati. The information is presented for the purpose of advancing the attendees' professional development.

University of Cincinnati College of Nursing
Nurses | 6 continuing education contact hours for nurses approved by the Ohio Board of Nursing through the OBN Approver Unit at the University of Cincinnati College of Nursing (OBN-011-93).

American Academy of Family Physicians
This Enduring Material activity, Optimizing Primary Care for Patients with Rare Diseases, from 08/01/2016 - 07/31/2017, has been reviewed and is acceptable for up to 6 Prescribed credit(s) by the American Academy of Family Physicians. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

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