Lindsey, a young woman living with FCS, shares a letter written to her rare disease.

Learn more

The Akcea Approach

Akcea is focused on advancing potential treatments for people living with serious and rare diseases. At the same time, we strive to support the communities of our disease areas of focus in a variety of ways.

To learn more about FCS, including signs and symptoms of the disease; read stories of people living with FCS; and access additional information and resources, visit


We are proud of our partnerships with the rare disease advocacy community that serves patients, families and caregivers affected by our disease areas of focus – including FCS, FPL, ATTR amyloidosis and Lp(a). Whether you or a loved one have been newly diagnosed, or you have been affected by one of these disorders your entire life, the organizations listed below can provide a wealth of additional educational and support resources.

Cardiometabolic disorders


FCS Foundation
LPLD Alliance
Association Francophone Hypertriglycéridémies Majeures Génétiques (AFHyMaGe)


Lipodystrophy United


National Pancreas Foundation (NPF)

Find a Pancreatitis Center

Lipid Disorders

National Lipid Association
Foundation of the National Lipid Association

Find a Lipidologist


Lipoprotein(a) Foundation

ATTR amyloidosis

hATTR Change the Course

Amyloidosis Support Group 
Transthyretin Amyloidosis (ATTR) Foundation
Amyloidosis Support Network 
Amyloidosis Research Consortium

My Amyloidosis Pathfinder
Discover treatment centers and clinical trials that match your amyloidosis

Rare Disease

United States
EveryLife Foundation for Rare Diseases
National Organization for Rare Disorders (NORD)
Global Genes

Rare Diseases Europe (EURORDIS)
Genetic Disorders UK

Canadian Organization for Rare Disorders (CORD)


Akcea considers organizational funding requests to support educational and patient-centric programs and initiatives.

Lindsey, a young woman living with FCS, shares a letter written to her rare disease.

Learn more