Rare Disease Advocates Raise Important Awareness at the Pennsylvania State Capitol Building for Rare Disease Day® on Tuesday, February 24, 2015
Harrisburg, PA — February 12, 2015 — Join patients with rare diseases, physicians, industry, and legislators in Pennsylvania on Tuesday, February 24, 2105 to raise important awareness for rare diseases as part of Rare Disease Day®.
During this event, learn about the challenges and triumphs of living with rare diseases in the Commonwealth of Pennsylvania and help raise awareness for the 30 million Americans currently living with a rare disease, two thirds of whom are children.
Many important decisions related to rare diseases are made at the state level, including providing newborn screening; making available support services to help families cope with complex medical needs; ensuring an environment that promotes innovative medical research and product development; and instituting insurance practices that assure patient access to medically necessary therapies. The implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of Americans are addressed.
The event will be held on Tuesday, February 24, 2015, from 11:30 AM to 1:30 PM at the State Capitol Building, East Wing Rotunda, North 3rd Street, Harrisburg, PA 17120.
The event is co-sponsored by the National Organization for Rare Disorders (NORD®) and the Connexion Healthcare Rare Disease Center of Excellence. NORD is a leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases, and national sponsor of Rare Disease Day in the United States, to educate and inform the public, elected officials, legislative staff, and the media. Connexion Healthcare is an award-winning, full-spectrum healthcare communications company founded in 1999, currently celebrating 16 years of providing unparalleled service to its clients. The Rare Disease Center of Excellence specializes in effectively communicating the science behind rare diseases and orphan drugs, and members have a personal connection with, and passion for, assisting patients and caregivers affected by rare diseases.
According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 Americans. One in 10 Americans live with a rare disease—affecting 30 million people—and two thirds of these patients are children. There are more than 7,000 rare diseases but only approximately 450 FDA-approved medical treatments. Many rare diseases are not being studied by medical researchers. Often, research is funded by the families and friends of patients or by patient organizations.
Rare Disease Day is an annual awareness day celebrated around the world and dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by these patients. Rare Disease Day takes place every year on the last day of February (February 28, or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. Rare Disease Day was established in Europe in 2008 by EURORDIS, the organization representing patients with rare diseases in Europe, and is now observed in more than 80 nations.
For more information about Rare Disease Day in Harrisburg and registration, go to http://bit.ly/PArareDay. For information about global activities, visit www.rarediseaseday.org. To search for information about rare diseases, visit the NORD Web site at www.rarediseases.org. To learn more about Connexion Healthcare, visit http://connexionhealthcare.com/rare-disease/.