Akcea Therapeutics Recognizes Rare Disease Day by Spotlighting Several Historic "Firsts" for People Living with Familial Chylomicronemia Syndrome

Upcoming global FCS Summit will enable advocates to connect and build a stronger FCS community

CAMBRIDGE, Mass., Feb. 28, 2018 (GLOBE NEWSWIRE) -- Akcea Therapeutics, Inc. (NASDAQ:AKCA), an affiliate of Ionis Pharmaceuticals, Inc., focused on developing and commercializing drugs to treat patients with serious cardiometabolic diseases caused by lipid disorders, today announced the company's support for Rare Disease Day 2018, including many first-time efforts to connect and support the global community for individuals and families affected by familial chylomicronemia syndrome (FCS).

"As with many individuals who are diagnosed with a rare disease, people living with FCS and their caregivers often express feelings of isolation. Most have never met another person with FCS," said Paula Soteropoulos, president and chief executive officer of Akcea. "We are proud to support efforts to help more people living with FCS build the connections they need for information, support and advocacy. There has been a lot of progress over the past several years, but there is still much more work ahead. With a stronger and more connected FCS community, we can raise more awareness of the burden of this disease, help patients receive a diagnosis faster, and work to improve the lives of more patients in need around the world."

Established in 2008 by EURORDIS, Rare Disease Day takes place on the last day of February each year, with the goal to raise awareness about rare diseases and their impact on patients and their caregivers.

Among the "firsts" for the FCS community in 2017 or planned for 2018:

• Akcea will sponsor the FCS Global Connection Summit, a first-ever global advocacy meeting taking place in March 2018 in The Netherlands. The program will support efforts to connect, share learnings and build a stronger FCS advocacy community.
   
• "Connection and Hope," a new video sponsored by Akcea featuring an FCS patient named Aaron and his community of caregivers, will be distributed to global audiences. Aaron's story helps to demonstrate the value of connecting with others with similar journeys when diagnosed with a rare disease. To view this video, click here.
   
• Akcea sponsored a meeting in Canada for the FCS community that included a demonstration of customized meal preparation in collaboration with The Culinary Institute.
   
• A new outline of nutritional resources specifically designed for people living with FCS, developed by dieticians and other experts and supported by Akcea, is now available at on FCSFocus.com.