Sep. 25, 2018
Posted by Valaree DonFrancesco
Washington, D.C., September 25, 2018 – The National Organization for Rare Disorders (NORD) announced today it is enhancing its Rare Disease Database which serves as a valuable source of information for patients, families and caregivers in need of easy to understand language on rare diseases that are frequently misdiagnosed or undiagnosed. The enhancements to the database are made possible through a grant from the Anthem Foundation, the charitable arm of Anthem, Inc. The NORD website, www.rarediseases.org, receives more than one million views a month.
“Individuals who are diagnosed with a rare disease, and their families, often have a difficult time finding accurate and easy to understand information about their medical condition,” said Stephen Friedhoff, MD, chief clinical officer at Anthem. “Through our collaboration with the National Organization for Rare Diseases, we hope to improve the health and well-being of individuals who have been diagnosed with rare diseases and provide them with knowledge that can help them to better navigate the healthcare system, understand their condition and identify treatment options and support resources.”
The $95,000 grant from the Foundation will allow NORD to improve the effectiveness of the database and upgrade the website’s functionality and platform to accommodate the expansion of reporting. These improvements will create a more user-friendly interface that will benefit patients and caregivers as well as researchers, medical professionals, public policy officials, and members of the media who are seeking information about rare diseases.
“We are very grateful to the Anthem Foundation for their generosity, which will allow us to improve the Rare Disease Database, a resource so many in the rare disease community find useful,” says Peter L. Saltonstall, President and CEO of NORD. “Providing education, disseminating information, and raising awareness are some of NORD’s key goals, and we value the support of partners like Anthem Foundation in helping us meet them.”
To date, the Anthem Foundation funding has also supported the addition of 24 new disease reports, reviewed by rare disease experts from Harvard Medical School, Seattle Children’s Hospital, Mayo Clinic, Johns Hopkins Medicine and other leading medical schools and teaching hospitals. The information about specific rare diseases on the NORD website (www.rarediseases.org) is free and available to everyone, accessible either online or in downloadable format.
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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 35 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 280 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.
About Anthem Foundation
The Anthem Foundation is the philanthropic arm of Anthem, Inc. and through charitable contributions and programs, the Foundation promotes the inherent commitment of Anthem, Inc. to enhance the health and well-being of individuals and families in communities that Anthem, Inc. and its affiliated health plans serve. The Foundation focuses its funding on strategic initiatives that address and provide innovative solutions to health care challenges, as well as promoting the Healthy Generations Program, a multi-generational initiative that targets specific disease states and medical conditions. These disease states and medical conditions include: prenatal care in the first trimester, low birth weight babies, cardiac morbidity rates, long term activities that decrease obesity and increase physical activity, diabetes prevalence in adult populations, adult pneumococcal and influenza vaccinations and smoking cessation. The Foundation also coordinates the company’s year-round Associate Giving program which provides a 50 percent match of associates’ pledges, as well as its Volunteer Time Off and Dollars for Doers community service programs. To learn more about the Anthem Foundation, please visit http://www.anthem.foundation and its blog at https://medium.com/anthemfoundation.