Community focuses on elevating awareness of the burden of FCS and impact on daily living
BOSTON, Nov. 02, 2018 — Akcea Therapeutics, Inc. (NASDAQ:AKCA), an affiliate of Ionis Pharmaceuticals, Inc., today recognizes the inaugural Familial Chylomicronemia Syndrome (FCS) Awareness Day on November 2, 2018. FCS Awareness Day, which will occur annually on the first Friday in November, is a global observance to build broader awareness of the challenges associated with the disease.
“We are very proud to recognize the first global FCS Awareness Day along with all members of the FCS community around the world. As we advance our research and understanding of FCS, this historic event is another symbol of how far the community has come in recent years,” said Molly Harper, VP, Global Head & Franchise General Manager of Akcea Therapeutics.
Familial chylomicronemia syndrome (FCS) is an ultra-rare, devastating hereditary disease that causes unpredictable and potentially fatal acute pancreatitis, chronic complications due to permanent organ damage, and a severe impact on daily living. It is estimated that there are between 3,000 to 5,000 people living with FCS worldwide.
“With the creation of an FCS Awareness Day, patients, caregivers and families have a new platform and opportunity to share their stories and to help others learn about FCS,” said Alan Gilstrap, executive director, advocacy and policy at Akcea. “We have had the privilege of hearing from so many patients about their experiences. Their stories highlight the continuing challenges that FCS presents every day and we are continuing our commitment to the lipid and FCS communities. Our hope is that more patients and caregivers can connect with each other, as we now know there are several benefits that connectivity can provide in FCS.”
In July, Akcea announced results of the CONNECT study providing many first-time assessments of the benefits of patient connectivity in FCS. Results showed a range of benefits when patients and caregivers connect in person or online, including improved perceptions of overall health, disease outlook, motivation to take care of health and emotional well-being. The study also found that connecting with other patients can positively impact the quality of life for people living with FCS.
“As part of the global FCS community, we are so pleased to recognize the first FCS Awareness Day, which is a great reflection of our mission to build awareness and provide support while also advocating for research that will lead to a treatment for FCS,” said Lindsey Sutton, co-president of The FCS Foundation. “As someone who knows personally how devastating FCS can be, I hope this day serves as a way to educate others about the symptoms and burden of the disease. Living with FCS can often feel isolating, and our goal is to help all patients realize that they are not alone in dealing with the challenges brought on by FCS.”
The FCS Foundation, along with members of the global FCS Community, invite patients, caregivers, clinicians, friends and family to participate on social media using hashtags #FCSAWARENESSDAY, #ACTIONFCS and #LIVINGWITHFCS.
FCS is an ultra-rare disease caused by impaired function of the enzyme lipoprotein lipase (LPL) and characterized by severe hypertriglyceridemia (>880mg/dL) and a risk of unpredictable and potentially fatal acute pancreatitis. Because of limited LPL function, people with FCS cannot breakdown chylomicrons, lipoprotein particles that are 90% triglycerides. In addition to pancreatitis, FCS patients are at risk of chronic complications due to permanent organ damage, including chronic pancreatitis and pancreatogenic diabetes. They can experience daily symptoms including abdominal pain, generalized fatigue and impaired cognitions that affect their ability to work. People with FCS also report major emotional and psychosocial effects including anxiety, social withdrawal, depression and brain fog. There is no effective therapy for FCS currently available. Additional information on FCS is available at www.fcsfocus.com, and through the FCS Foundation at https://www.livingwithfcs.org and the LPLD Alliance at www.lpldalliance.org. For a full list of organizations supporting the FCS community worldwide, please click here.
ABOUT AKCEA THERAPEUTICS, INC.
Akcea Therapeutics, Inc., an affiliate of Ionis Pharmaceuticals, Inc., is a biopharmaceutical company focused on developing and commercializing drugs to treat patients with serious and rare diseases. Akcea is advancing a mature pipeline of six novel drugs, including TEGSEDITM (inotersen), WAYLIVRATM (volanesorsen), AKCEA-APO(a)-LRx, AKCEA-ANGPTL3-LRx, AKCEA-APOCIII-LRx, and AKCEA-TTR-LRx, all with the potential to treat multiple diseases. All six drugs were discovered by and are being co-developed with Ionis, a leader in antisense therapeutics, and are based on Ionis’ proprietary antisense technology. TEGSEDI is approved in the U.S., E.U. and Canada. WAYLIVRA is under regulatory review for the treatment of familial chylomicronemia syndrome, or FCS, and is currently in Phase 3 clinical development for the treatment of people with familial partial lipodystrophy, or FPL. Akcea is building the infrastructure to commercialize its drugs globally. Akcea is a global company headquartered in Boston, Massachusetts. Additional information about Akcea is available at www.akceatx.com.
FORWARD-LOOKING STATEMENT 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 quarterly report on Form 10-Q and other documents, which are on file with the SEC.
In this press release, unless the context requires otherwise, “Akcea,” “Company,” “we,” “our,” and “us” refers to Akcea Therapeutics.
Ionis Pharmaceuticals™ is a trademark of Ionis Pharmaceuticals, Inc. Akcea Therapeutics™, TEGSEDI™ and WAYLIVRA™ are trademarks of Akcea Therapeutics, Inc.
Akcea Investor Contact: Kathleen Gallagher Vice President of Communications and Investor Relations (617)-207-8509 [email protected]
Akcea Media Contact: Bill Berry Berry & Company T: 212 253-8881 [email protected]
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