Full Prescribing Information Important Safety Information

Questions?  Call 877-473-3179 (7:00 am — 6:00 pm CST) or email us.

Orfadin extras

Tips, information, and resources for patients and families managing HT-1.

One step ahead

You know those life-changing moments that will never fade from your memory? Mine came in the form of a phone call eight days after we brought our brand-new baby daughter home from the hospital for the first time.

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Cozy cooking

Cold, blustery weather offers the perfect opportunity to huddle up inside and enjoy a hot, home cooked treat with friends and family.

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Memories of camp

This past summer, five members of the Sobi team headed to North Carolina to volunteer at the Network of Tyrosinemia Advocates' (NOTA) first-ever camp for children with HT-1 and their families.

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Orfadin Ambassadors: Robynne

When her son was diagnosed with HT-1, Robynne didn’t know anyone else who was going through what she was.

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We’re here 4U

Need recipe ideas? Help navigating insurance? Want to connect with the HT-1 community? Orfadin4U is here to support you.

LEARN MORE

Dining out: quick tips

Ordering at a restaurant can be tricky when you or a loved one has a dietary restriction. But that doesn’t mean you should miss out! Here are a few tips for families managing HT-1.

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DO YOU EVER FEEL ISOLATED?

Managing a rare disease like HT-1 might cause feelings of isolation. We asked parents caring for children with HT-1 for their advice.

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ALL ABOUT THE ORFADIN GENERATION

From summer campers to college students, there is a lot to celebrate in the Orfadin Generation.

CHECK IT OUT

SUMMER SUBSTITUTES

With all the picnics, barbecues, and ice cream trucks, summer fun can seem hard to navigate with HT-1. So we put together a handy substitutions guide to help you enjoy all the festivities the warm weather brings.

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INDICATION AND USAGE

Orfadin is a synthetic reversible inhibitor of 4-hydroxyphenylpyruvate dioxygenase indicated for use as an adjunct to dietary restriction of tyrosine and phenylalanine in the treatment of hereditary tyrosinemia type 1 (HT-1).

IMPORTANT SAFETY INFORMATION

Tyrosine levels can increase in the blood if you do not restrict tyrosine and phenylalanine in your diet while taking Orfadin. Too much tyrosine in the blood can cause serious eye problems or other complications.

Do not adjust your Orfadin dosage in order to lower the tyrosine levels in the blood.

A reduction in the number of white cells and platelets in the blood have been observed during treatment with Orfadin. Your platelet and white blood cell counts should be monitored regularly during Orfadin treatment.

The most common adverse reactions to taking Orfadin are liver cancer, liver failure, low platelets or white cells in the blood, and complaints related to the eyes, including conjunctivitis, corneal opacity, inflammation of the cornea, and extreme sensitivity to light.

Tell your physician promptly if you have unexplained eye symptoms, rash, jaundice (yellowing of the skin or whites of the eyes) or excessive bleeding.

Use Orfadin during pregnancy only if the potential benefit justifies the potential risk to the fetus.

Nursing women should discontinue either Orfadin or breast-feeding based on the recommendation of your healthcare professional.

Please see full Prescribing Information