“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
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 2018in 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
Canadafor 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.
- A series of webinars led by registered dieticians, nutritionists and psychologists with information about healthy eating for people living with FCS was launched.
- Results of the first study of the impact of FCS on patient quality of life – known as the IN-FOCUS Study - were presented at the National Organization for Rare Diseases (NORD) Rare Diseases and Orphan Products Breakthrough Summit in
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.com, through the
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