Message from the Program Chair

Robert Saul, MD, FACMG, FAAP
Program Chair
Medical Director, General Pediatrics
Children’s Hospital, Greenville Health System
Greenville, SC
Project Co-Director
American Academy of Pediatrics Genetics
  in Primary Care Institute
Elk Grove Village, IL

A Message from Program Chair, Robert Saul, MD, FACMG, FAAP

Welcome to Rare Opportunities in Primary Care, your new partner in the rare disease space. Rare diseases affect 1 in every 10 patients.1 As primary care clinicians, we play an important role in the care of these patients, yet as a group, we still have so many unanswered questions.

Rare Opportunities in Primary Care’s CME program was founded with this in mind: to help primary care clinicians enhance the care we provide for patients with rare diseases. Please join my fellow faculty members and me as we begin this journey and attempt to change existing paradigms.

What clinical clues might expedite diagnosis? How do we proceed once a patient has been identified as having a rare disease? What tools and resources are available to help us provide the best care for patients, and how do we leverage the connections and information we already have? This CME program will address these questions and more.

Given that rare diseases affect almost 30 million patients,1 having a rare disease does not make a person rare—nor does it make it rare to have a patient with a rare disease in your practice. It’s time to start changing treatment algorithms, and that starts with primary care.

We look forward to your participation in this program. Don’t hesitate to contact us if you have any questions.

Sincerely,

Robert Saul, MD, FACMG, FAAP
Program Chair
Medical Director, General Pediatrics
Children’s Hospital, Greenville Health System
Greenville, SC
Project Co-Director
American Academy of Pediatrics Genetics in Primary Care Institute
Elk Grove Village, IL

The views and opinions expressed herein are those of the presenters and interviewees. Rare Opportunities in Primary Care, the University of Cincinnati, the University of Cincinnati College of Nursing, the American Academy of Family Physicians, and Health and Wellness Education Partners do not recommend or endorse any specific health care services or providers.

Overall Course Objectives

Optimizing Primary Care for Patients with Rare Diseases, the first program of its kind, strives to help primary care clinicians:

  1. Identify clinical clues that expedite diagnosis of rare diseases in different clinical settings
  2. Develop successful referral networks
  3. Optimize care for pediatric patients
  4. Utilize a whole-patient approach with an enhanced understanding of the impact of rare disease progression on mental health conditions

Target Audience

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

Accreditation

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 CreditsTM. 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.

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

1. Global Genes. Rare diseases: facts and statistics. https://globalgenes.org/rare-diseases-facts-statistics/. Published 2015. Accessed May 10, 2016.

Select an Activity

Video

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Why Primary Care Matters in Rare Diseases


Patient Cases

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Living with and Managing Rare Diseases: Patient and Clinician Testimonials

  • Pediatric Patient
  • Adult Patient
  • Older Adult Patient

Narrated Presentation

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Identification of Rare Diseases in the Primary Care, Urgent Care, and Emergency Care Settings

  • Best Practices in Primary Care
  • Best Practices in Urgent Care
  • Best Practices in the Emergency Room

Monograph

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Successful Referral Networks


Narrated Presentation

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Genetic Testing in Clinical Practice


Video

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Optimizing Pediatric Care for Patients with Complex Medical Conditions


Narrated Presentation

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Mental Health Care for Patients with Complex Health Care Needs


Ask the Faculty

Ask a faculty member your question about providing primary care for patients with rare diseases
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