We are thrilled with the overwhelming success in educating people throughout the US and world on this very rare disease.
PLAINSBORO, N.J. (PRWEB) August 10, 2014
Rare Disease Communications (publisher of Rare Disease Report) launched a disease awareness initiative to educate U.S. physicians about a rare condition called Familial Chylomicronemia Syndrome (FCS) in May 2014. The site – http://fcs.raredr.com/– was designed to increase FCS awareness among healthcare professionals (HCPs) and educate them on the early signs and symptoms of FCS and the importance of patients adhering to a strict low fat diet.
This site has had a lot of interest and is being sought as a useful tool for those with inquiries on the uncommon disease state. Since its launch, the website has been viewed by over 1500 individuals from 65 countries. This is significant since only about 1 in 1 million people have this disease.
The site includes 11 videos from a panel of FCS experts, including Daniel Rader, MD, Perelman School of Medicine, University of Pennsylvania, Philadelphia PA; Ira Goldberg, MD, Division of Endocrinology, Diabetes, & Metabolism, NYU Langone Medical Center, New York, NY; and Wahida Karmally, RD, Institute of Human Nutrition, Columbia University, New York, NY.
FCS is a very rare hereditary condition in which individuals lack a properly functioning, lipoprotein lipase (LPL), an enzyme that clears triglycerides from plasma. The disruption of the enzyme activity leads to very high concentrations of triglycerides and particularly chylomicrons in the blood plasma (chylomicronemia).
FCS is also referred to familial LPL deficiency (LPLD), or hyperlipoproteinemia Type 1. In the new FCS Disease Awareness Initiative, clinicians can learn more about:
- Genetics, prevalence, and natural history of FCS
- Clinical signs and symptoms of FCS
- Treatment options available to lower the risk of pancreatitis
- Resources available to clinicians treating patients with FCS, including information about patient registries, references to over 30 peer reviewed articles, and a video library
Early recognition is important for this very rare condition. Children with unexplained high levels of triglycerides, skin rashes (xanthoma), or creamy blood samples (due to high levels of chylomicrons) should be tested for FCS. A FCS registry is also available to better understand the natural history of this condition.
"We are thrilled with the overwhelming success in educating people throughout the US and world on this very rare disease,” said Peter Ciszewski, President of Rare Disease Communication, Plainsboro, NJ. “Hopefully, this initiative will continue to raise awareness of this silent disease and bring attention to the patient registry that will allow us to better understand the natural history of this disease.”
“The mission of Rare Disease Report is to raise awareness of orphan conditions so that patients will be diagnosed and treated more efficiently. The FCS website fulfills that mission,” said James Radke,
Vice President of Editorial at Rare Disease Communications, adding, “The website educates endocrinologists, GPs, lipidologists, and others about FCS and some of its unique symptoms. As a result, if they see a patient with unexplained pancreatitis or a creamy blood sample, they should suspect FCS and run the proper diagnostic tests.“
“Websites likes this one are what Rare Disease Communications does best. We can create the content and make sure it gets to its intended audience using our strong social media presence,” stated Peter Ciszewski.
It is estimated that 1 in 1 million people are born with FCS. Currently, the standard of care for FCS patients is a very low fat diet (≤ 15% by calories), in which patients consume fewer than 20-25 g of fat per day. However, most patients find it very difficult to adhere to such a diet. Patients should also avoid substances known to increase the level of triglycerides in the blood, such as alcohol, diuretics, systemic steroids, and estrogens.
About Rare Disease Communications
Rare Disease Report (http://www.raredr.com) is published by Rare Disease Communications (RDC) LLC, a full service health care agency dedicated to raising awareness of orphan conditions so that patients will be diagnosed and treated more efficiently. RDC is owned in part by MJH & Associates Inc, a healthcare publishing company that reaches nearly every sector of healthcare professionals, providing resources and information to physicians, pharmacists, managed care professionals, and many others. MJH & Associates combines the power of an established network of publications and websites with the customer service focus and customization capabilities of a boutique firm.
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Rare Disease Communications
President, Rare Disease Communications