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.

Orfadin Ambassadors: Robynne

When her son was diagnosed with HT-1, Robynne didn’t know anyone else who was going through what she was. Now, she’s giving families living with HT-1 something she didn’t have: support from someone who truly understands.

We’re here 4U

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

With Orfadin4U, you have access to:

Patient Assistance Program

A supportive HT-1 community + mentorship program

Personalized pharmacy services

HT-1 recipe ideas + lifestyle support

Insurance and co-pay assistance

“Orfadin4U works hard for us, helping my daughter get her medication. They provided pamphlets that explain tyrosinemia and how it’s treated. When my daughter started public school, I gave those out to the principal, the nurse, and her teacher, so everybody could learn.”

– Shannon, cares for daughter with HT-1

Reach out

Call 877-473-3179 (between 7:00 am – 6:00 pm CST) Email orfadin.us@sobi.com

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.

Dig around before digging in

If they have a menu online, check it out to make sure the restaurant has some HT-1-friendly options. You may also want to call and ask if they’re flexible about substitutions.

Go gluten-free

Some restaurants have gluten-free menus. Ask your server if they offer one. If they don’t, look for the little asterisks or symbols next to the menu items. These are sometimes used to call out specific types of dishes, like vegan, nut-free, or gluten-free options.

Look to the sides

The sides section of the menu usually has plenty of low-protein options, including french fries, cooked vegetables, salads. Try mixing and matching or opting for a double order.

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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.

  • “In the beginning, I felt very isolated. My first piece of advice is to lean on your medical support team. Second, don’t be afraid to express your feelings to your family, friends, and network. The people in my network supported me and even bought me things that might help, like cookbooks.”

    — La-Tasha, cares for 11-year-old daughter with HT-1

  • “Our clinic is very active and hosts events. We’ve had cooking classes, blueberry picking, and guest speakers. Even though my daughter is the only tyrosinemia patient there, we connect with other metabolic patients through shared dietary restrictions.”

    — Shannon, cares for 7-year-old daughter with HT-1

  • “We felt nervous when our son was first diagnosed, not knowing what the future would look like. Empowerment has been important for us. We give him the tools he needs to make decisions, understand, and be able to explain tyrosinemia to other people, and that has made him feel more confident. It’s a learning process.”

    — Amanda, cares for 8-year-old son with HT-1

Want to talk to someone who truly understands the HT-1 journey?

connect with a mentor

All about the orfadin generation

From summer campers to college students, there's lots to celebrate in the Orfadin Generation.

A 2018 SNAPSHOT

overnight summer campers

3

graduating high school

5

elementary school students

36

musicians

3

college students

8

infants

15

aspiring time machine builder

1

adults

28

basketball players

2

lacrosse players

3

parents

4

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.

DOWNLOAD THE GUIDE

Instead of cheeseburgers

Try low-protein veggie burgers with plant-based cheese

Instead of hot dogs

Try tacos with grilled veggies

Instead of bbq chicken

Try BBQ cauliflower



Instead of pulled pork bbq

Try pulled jackfruit with BBQ sauce

Instead of grilled meat

Try grilled eggplant + portobello mushrooms

Instead of ice cream

Try dairy-free ice cream, sorbet, or Italian ice



Instead of pasta salad

Try zucchini noodle salad

Instead of strawberry shortcake

Try strawberries and coconut-based yogurt

Other tyro-friendly summer treats

S'mores with dark chocolate, all-fruit smoothies, grilled pineapple, veggie kebabs, corn on the cob, fruit salads + veggie salads

*Every patient with HT-1 is different. Talk to your doctor about what's appropriate for your specific medical and dietary needs.

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Tips, news, information + more

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