May. 9, 2017
Posted by Christina Jensen
Washington, D.C., May 9, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the launch of a free continuing medical education (CME) program to educate medical professionals about rare diseases. The first event will take place on June 17 in Washington, D.C. For more information, or to register, visit https://rarediseases.org/cme/.
The program, provided jointly with the University of Massachusetts Medical School, is designed for general practitioners, emergency room physicians and staff, pediatricians, family medicine practitioners and staff. The overall mission is to raise awareness about the prevalence of patients afflicted with a rare disease and improve patient outcomes.
The event on June 17, titled Finding a Zebra Among Many Horses, will cover diagnostic hurdles, tools and resources for diagnosis, and will provide a demonstration of resources for providers and patients in areas such as rare disease advocacy, education, and research.
Nearly 1 in 10 Americans, or 30 million people, live with a rare disease—more than half of whom are children. The average time to diagnosis for a rare disease patient is 5-7 years. There are 7,000 rare diseases present across the medical spectrum, yet patients face similar challenges that include delayed diagnosis or misdiagnosis, lack of access to treatment, and limited research.
“Physicians will encounter many rare disease patients during their careers, yet most are is not exposed to these medical conditions beyond a sentence or two in a textbook,” said Peter L. Saltonstall, president and CEO of NORD. “NORD’s educational programs aim to better equip and educate medical professionals to identify rare diseases and better care for patients.”
As the primary charity representing Americans with rare diseases, NORD established its CME program as part of a broader strategic initiative to promote earlier diagnosis and state-of-the-art care for all people with rare diseases. In addition to its educational work, NORD provides programs of advocacy, research, and patient assistance as part of its mission to eliminate the challenges that patients face.
About the National Organization for Rare Disorders (NORD)®
The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most. NORD represents more than 260 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community. www.rarediseases.org.
Jennifer Huron, email@example.com, 203.304.7258