Programs to provide new levels of information and support for Canadians living with Familial Chylomicronemia Syndrome (FCS) as well as family members and caregivers
OTTAWA, Feb. 27, 2018 /CNW/ - Akcea Therapeutics Canada, the Canadian subsidiary of Akcea Therapeutics, Inc., an affiliate of Ionis Pharmaceuticals, Inc., today announced the launch of FCS Focus Education and Support Program for Canada and the debut of the new online patient support platform www.FCSFocus.ca
Familal Chylomicronemia Syndrome, or FCS, is caused by impaired function of an enzyme that normally helps to breakdown chylomicrons, lipid particles rich in triglycerides. Even when adhering to very restrictive diets to reduce triglyceride levels, people with FCS can have triglyceride levels ten to twenty times that of healthy individuals. As a result, individuals with FCS live at risk of acute pancreatitis, which can be recurrent and is potentially fatal, in addition to daily symptoms such as abdominal pain and fatigue that can impair daily living.
By enrolling in the FCS Focus Education and Support Program for Canada, individuals and families affected by FCS can have access to a wide-range of customized information, services and support, including:
- information about FCS including recommendations related to diet and nutrition;
- a dedicated nurse specialist available to answer questions;
- opportunities to consult with a dietician to create customized meal plans;
- practical tools including an FCS Carebook and Nutritional Kit with FCS friendly foods/recipes, fat trackers and cooking tips; and,
- opportunities to connect with other patients, caregivers and families through forums and webinars.
"Patients living with FCS talk about how isolated they feel. As is often the case in rare diseases, most will not know anyone outside of their family with the condition. Many feel they don't know what to expect and what information to trust. Having the FCS Focus Education and Support Program, based in Canada, with reliable information from credible sources, helpful tools and tips, and connections to experts as well as other patients, families, and caregivers will make all the difference for those who are feeling alone and living with FCS." - Durhane Wong-Rieger, President & CEO, Canadian Organization for Rare Disorders (CORD).
In addition to the FCS Focus Education and Support Program, the online platform www.FCSFocus.ca is now available with disease and nutritional information and perspectives from other patients and caregivers. Residents of Canada are invited to learn more and enroll in the FCS Focus Education & Support Program by calling 1-833-229-1034 or visiting www.FCSFocus.ca.
"We have heard directly from both physicians and people living with FCS about how much it means to have quality information about the disease with which they live and resources to help them make informed and practical decisions about their own care. Once diagnosed, people often seek information about FCS, including nutrition, and are looking for opportunities to hear about FCS community events so they can learn from others and share their experiences with other Canadians living with FCS," said Jared Rhines, general manager at Akcea Therapeutics Canada. "The relationship between these patients and their healthcare providers is paramount and Canada's care of these patients is world class. We believe the FCS Education and Support Program can provide additional tools and resources to support and further strengthen the FCS community."
Familial Chylomicronemia Syndrome, or FCS is a severe, rare disorder characterized by extremely high levels of triglycerides, daily symptoms such as abdominal pain, and the risk of recurrent, potentially fatal, acute pancreatitis. People with FCS are unable to effectively metabolize large, triglyceride-rich lipid particles called chylomicrons due to a deficiency in lipoprotein lipase, an enzyme that helps to break down triglycerides. There is no effective therapy available. Additional information on FCS is available at www.fcsfocus.ca. For a full list of organizations supporting the FCS community worldwide, please click here.
ABOUT AKCEA THERAPETICS CANADA
Akcea Therapeutics Canada, based in Ottawa Ontario, is the Canadian subsidiary of Akcea Therapeutics (NASDAQ: AKCA), an affiliate of Ionis Pharmaceuticals, Inc (NASDAQ: IONS). Akcea is a biopharmaceutical company focused on developing and commercializing drugs to treat patients with serious cardiometabolic diseases caused by lipid disorders. Akcea's connections to Canada are considerable where several world-renowned scientists in lipidology have played a critical role in the clinical trials for our programs. Akcea Therapeutics Canada is a member of Innovative Medicines Canada, the industry association representing Canada's research-based pharmaceutical companies.
Akcea is advancing a mature pipeline of four novel drugs that were discovered by and are being co-developed with Ionis, a leader in antisense therapeutics, and are based on Ionis' proprietary antisense technology. Akcea's corporate headquarters is located in Cambridge, Massachusetts.
This press release includes forward-looking statements regarding the business of Akcea Therapeutics, Inc. Any statement describing Akcea's goals, expectations, financial or other projections, intentions or beliefs is a forward-looking statement and should be considered an at-risk statement. Such statements are subject to certain risks and uncertainties, particularly those inherent in the process of discovering, developing and commercializing drugs that are safe and effective for use as human therapeutics, and in the endeavor of building a business around such drugs. Akcea's forward-looking statements also involve assumptions that, if they never materialize or prove correct, could cause its results to differ materially from those expressed or implied by such forward-looking statements. Although Akcea's forward-looking statements reflect the good faith judgment of its management, these statements are based only on facts and factors currently known by Akcea. As a result, you are cautioned not to rely on these forward-looking statements. These and other risks concerning Akcea's programs are described in additional detail in its final prospectus for its initial public offering and its most recent quarterly report on Form 10-Q, which are on file with the SEC.
In this press release, unless the context requires otherwise, "Ionis", "Akcea," "Company," "Companies" "we," "our," and "us" refers to Ionis Pharmaceuticals and/or Akcea Therapeutics.
Ionis Pharmaceuticals™ is a trademark of Ionis Pharmaceuticals, Inc. Akcea Therapeutics™ is a trademark of Ionis Pharmaceuticals, Inc.
SOURCE Akcea Therapeutics
For further information: Media and Investor Contact: Kathleen Gallagher, Head of Communications, Akcea Therapeutics Canada, (617)-207-8509, [email protected]