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Resources for You
Learn about other organizations that provide community support and education materials for those affected by hereditary ATTR amyloidosis. Check out their online resources below.
Amyloidosis Support Groups
A website dedicated to support groups for those suffering from amyloidosis and other amyloidosis-related diseases.
Amyloidosis Foundation
Foundation whose priorities include raising awareness, educating medical professionals, and empowering patients affected by amyloidosis.
Amyloidosis Research Consortium
The Amyloidosis Research Consortium is accelerating the development of effective treatments for systemic amyloidosis through key research, collaboration, and innovation.
National Organization for Rare Disorders (NORD)
NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to improving the lives of individuals and families living with rare diseases.
The Foundation for Peripheral Neuropathy
A public charity foundation that strives to cure painful neuropathies through collaborative research, education, and treatment.
Global Genes
A global non-profit advocacy organization that provides education and advocacy for the rare disease community.
Discover More
Get more information about Alnylam and ONPATTRO by downloading the brochures below.
We’ll help you work with your healthcare professional to begin the process
Important Safety Information
What are the most important things I should know about ONPATTRO® (patisiran)?
ONPATTRO can cause:
• Infusion-related reactions
ONPATTRO is given as a drip into a vein (called an “intravenous infusion”). Reactions to this infusion may happen during treatment with ONPATTRO. Before each infusion you will be given medicines that help to lower the chance of infusion-related reactions.
Tell your doctor or nurse right away if you experience any of the following signs of an infusion-related reaction during treatment:
• Reddening of the face or body (flushing), skin warm
• Body aches or pain, including pain in the back, neck, or joints
• Feeling sick (nausea)
• Stomach pain
• Feeling short of breath, cough, or other breathing problems
• Headache
• Chest discomfort or chest pain
• Rash
• Chills
• Dizziness
• Feeling tired (fatigue)
• Rapid heart rate
• Facial swelling
If you have an infusion-related reaction, your doctor or nurse may slow down or stop your infusion, and you may need to take other medicines. When these reactions stop, or get better, your doctor or nurse may decide to start the infusion again.
• Low Vitamin A levels
Treatment with ONPATTRO lowers the amount of vitamin A in your blood. Your doctor will tell you to take a vitamin A supplement every day. You should not take more than the amount of vitamin A recommended by your doctor.
Low vitamin A levels can affect vision. If you have problems with your vision (e.g., night blindness) while taking ONPATTRO, talk to your doctor. Your doctor may refer you to an eye specialist.
What are the common side effects of ONPATTRO?
The most common side effects of ONPATTRO are respiratory infections, such as colds, sinus infections, and nasal congestion, and infusion-related reactions. These are not all the possible side effects of ONPATTRO. Talk to your doctor about side effects that you experience. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Indication
What is ONPATTRO?
ONPATTRO is a medicine that treats the polyneuropathy caused by an illness called hereditary transthyretin-mediated amyloidosis (hATTR amyloidosis). ONPATTRO is used in adults only.