ACCORD RD1° Conference to Address Gaps in Primary Care for People with Rare Diseases

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Rare Diseases, Common Medical Needs

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On June 9-10, Las Vegas will host RD1°: Optimizing Primary Care for Patients with Rare Diseases, a continuing medical education (CME) event presented by the Association for Comprehensive Care in Rare Diseases (ACCORD). This conference is the first of its kind—and a first for ACCORD, whose mission is to provide education, tools, and resources to primary care clinicians that will help them provide comprehensive care to patients with rare diseases.

Nearly 1 in 10 Americans, or 30 million people, live with a rare disease—and two-thirds of these patients are children. However, having a rare disease doesn’t make the person “rare,” and people with rare diseases have common medical needs, too. In fact, rare diseases are often discovered in the primary care setting, where patients continue to be seen for routine medical care throughout their lives. Despite primary care clinicians assuming responsibility for the management and care of these patients’ common needs, the majority of primary care clinicians do not receive any special training on how to administer or adjust routine care for their patients with rare diseases. ACCORD hopes RD1° will bring these issues to light, as well as raise the bar for the quality of primary care provided to this population.

Conference Chairperson, Dr Robert Saul of Greenville, South Carolina, notes: “Although each of these diseases is rare on its own, together they affect the lives of 30 million Americans. Clearly, primary care providers must be better prepared to help identify and care for these patients.”

A survey conducted by ACCORD confirms that many health care professionals (HCPs) are less than confident providing routine care for patients with rare diseases. To address this gap, the RD1° conference will endeavor to help clinicians:

  • Understand why primary care is critical to the overall management of rare diseases
  • Identify clinical clues that expedite diagnosis of rare diseases in different clinical settings
  • Develop successful referral networks
  • Locate resources for clinical practice
  • Utilize tools and resources to manage the whole patient
  • Optimize care for special populations (eg, pediatric and female patients)

Continuing medical education credits will be available to HCPs through the University of Cincinnati, Health and Wellness Education Partners, and the Global Academy for Medical Education.

More information about the RD1° conference and ACCORD can be found at HCPs who treat people with rare diseases can register for the conference at


The Association for Comprehensive Care in Rare Diseases—or ACCORD—is a new ally in the rare disease community that focuses specifically on improving the quality of primary care for people living with rare diseases, by championing clinical and administrative best practices for managing these conditions, facilitating dialogue between primary care and specialty care providers, and equipping providers with tools and resources to address patients’ unmet needs.

ACCORD is committed to enhancing primary care for patients with rare diseases.

For more information on ACCORD, please visit or email contact(at)

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, Health and Wellness Education Partners, and the Global Academy for Medical Education.

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

Physicians | The University of Cincinnati designates this live activity for a maximum of 12 AMA PRA Category 1 CreditsTM. Physicians should claim only the credits commensurate with the extent of their participation in the activity.

Nurses | An application has been submitted for continuing education contact hours for nurses. Please contact meeting(at) to obtain information regarding approval status.

Jani Hegarty, President
Health and Wellness Education Partners
Ramsey, NJ
(201) 661-5552

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Jessica Tuohy
Health & Wellness Education Partners
+1 (201) 661-5552
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