Centric Health Resources supports third annual Rare Disease Day
CHESTERFIELD, Mo. A nationwide, patient-centered health management organization, serving patients with rare, ultra-orphan disorders, is supporting the third annual Rare Disease Day, alongside a coalition of 300 patient organizations, medical societies, government agencies and companies representing the rare disease community.
Centric Health Resources said that Rare Disease Day, which takes place on Feb. 28, is sponsored by the National Organization for Rare Disorders. The event calls attention to public health issues associated with the rare diseases that affect nearly 30 million Americans. Centric is part of NORD’s corporate council, which provides a platform for rare disease patient advocacy organizations and enables companies to discuss issues and trends with top orphan disease experts. NORD provides a nationwide network of online videos, patient stories and blogs; newspaper, radio, and television reports; state and municipal proclamations; a Rare Disease Hall of Fame for researchers; and other activities designed to raise awareness of what it means to have a rare disease.
“Patients with rare diseases and their families often feel isolated and forgotten,” said Craig Kephart, Centric president and CEO. “They have difficulty finding medical experts and accessing needed services. Also, with many rare diseases there are no approved treatments, and insurance may not cover treatments that are approved. Rare Disease Day shines light on these issues and builds much-needed awareness.”
In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. According to the National Institutes of Health, nearly 7,000 such diseases affect nearly 30 million Americans.
“People with rare diseases remain a medically underserved population in every country,” says Peter Saltonstall, NORDpresident and CEO. “This day is intended to bring together the patients and families with rare diseases to discuss the need for greater awareness, more research, and better access to diagnosis and treatment.”
Alliance Health Networks forms healthcare advisory board
SALT LAKE CITY Alliance Health Networks, which is building a universe of social health networks focused on such specific health conditions as diabetes, has formed a healthcare advisory board. Among the founding members: pharmacy industry veteran Gordon Barker.
According to Alliance Health’s CEO, Stead Burwell, the advisory board is designed to provide Alliance Health executive management and its board of directors with industry insights, feedback and strategic counsel in support of its efforts to build online social health networks that bring together patients, caregivers and industry participants.
Alliance Health’s first social health network DiabeticConnect.com, has attracted the largest online population of people living with or treating diabetes, according to the company.
Barker has a nearly 40-year career in the pharmacy industry that includes 30 years with Thrifty PayLess Drug Stores, now Rite Aid. He started there as a pharmacist and eventually became president and CEO. He then served as CEO of Snyder Drug from 2005 through early 2009. In addition, Barker served as chairman of the board of the Juvenile Diabetes Research Found and currently serves on its board of chancellors.
Additional members of the advisory board include McKesson veteran, Richard Hawkins; and Robert Johnson, former chairman and CEO of PCS Health Systems, which is now part of CVS Caremark.
Inhaled CF antibiotic receives FDA approval
BETHESDA, Md. The Food and Drug Administration has approved the first inhaled antibiotic for cystic fibrosis in more than a decade, according to a cystic fibrosis advocacy organization.
The Cystic Fibrosis Foundation announced the FDA’s approval of Cayston (aztreonam), developed by Gilead Sciences. The organization invested $1 million to help development of the drug.
“The approval of Cayston demonstrates that our drug-development model is working and making a real difference in the lives of people with cystic fibrosis,” Cystic Fibrosis Foundation president and CEO Robert Beall said in a statement. “We are delighted to have a new antibiotic in the arsenal to help fight the life-threatening infections associated with this disease, as we continue to push forward with other therapies that address the underlying cause of CF.”