Resources

Resources

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

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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.

hATTR Change the Course

hATTR Change the Course is dedicated to supporting and empowering the hATTR amyloidosis community by providing resources and tools for patients, their families, caregivers and healthcare professionals. To learn more about hATTR amyloidosis, including signs and symptoms; stories of people living with the disease; and additional information and resources, visit hattrchangethecourse.com or the hATTR Change the Course Twitter page or Facebook page.

hATTR Compass

Akcea and Ambry Genetics are partnering to offer no-cost, confidential genetic testing and genetic counseling to patients suspected of having or clinically diagnosed with hATTR amyloidosis through the hATTR Compass Program. To learn more, visit hattrcompass.com.

FCSFocus.com

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 FCSFocus.com.

Organizations

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.

hATTR amyloidosis

hATTR Change the Course
hATTR Compass
Amyloidosis Support Group 
Amyloidosis Foundation
Amyloidosis Support Network 
Amyloidosis Research Consortium

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

Cardiometabolic disorders

FCS

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

FPL

Lipodystrophy United

Pancreatitis

National Pancreas Foundation (NPF)

Find a Pancreatitis Center

Lipid Disorders

National Lipid Association
HEART UK
Foundation of the National Lipid Association

Find a Lipidologist

Lp(a)

Lipoprotein(a) Foundation

Rare Disease

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

Europe
Rare Diseases Europe (EURORDIS)
Genetic Disorders UK

Canada
Canadian Organization for Rare Disorders (CORD)

Sponsorships

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