Meet Joanna, Your Patient Education Liaison

PEL, Joanna

My Experience

I became a registered nurse 14 years ago, and have worked in patient education at all levels of my career.

My Inspiration

I was inspired to become a Patient Education Liaison when I learned that I could help educate patients with a rare disease.

Why I Love What I Do

I love what I do because it gives me the opportunity to help raise awareness of a rare disease and gives me joy that I am helping people—both directly and indirectly.

My Superpower

My superpower is listening, because I believe that everyone deserves to be heard.

Favorite Things

I love to be outdoors—for travel, sporting activities, and trips to the zoo.

My own experiences really play a large part in how I deliver education to patients and their families.

 

Joanna, Patient Education Liaison

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See How to Get Started

Once you and your doctor decide to begin treatment with ONPATTRO, we'll work with your healthcare team to start the process.

How to Get Started

Alnylam Assist® Case Manager Natalie

Call Natalie

1-833-256-2748

Monday - Friday,
8am - 6pm ET

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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 prescription medicine that treats the polyneuropathy caused by an illness called hereditary transthyretin-mediated amyloidosis (hATTR amyloidosis). ONPATTRO is used in adults only.

For additional information about ONPATTRO, please see the full Prescribing Information.