* Patient can try NITYR for 30 days, one-time, for free, as long as their doctor prescribes it and that have never used NITYR before. Subject to terms and conditions, eligibility criteria, and other federal and state law.

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* For eligible commercially insured patients. Doctor’s prescription required. Subject to terms and conditions and eligibility criteria. Program not available for government-insured patients and subject to other federal and state law.

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My story with NITYR

My son was really excited to be able to swallow the medication

Five-year-old Ethan has Hereditary Tyrosinemia Type 1 (HT-1). Like any family that has a child with this ultra rare condition, the family have found Ethan’s diet and medication regime very demanding.

Ethan started on Orfadin* (nitisinone) capsules as a baby, which his parents had to mix with water to create a suspension to syringe1 into his mouth. The medication, nitisinone, sometimes known as NTBC, needed to be kept in a refrigerator, which the busy family found restricting, as it meant carrying ice packs around when travelling even short distances.

Find out more about the family’s experience by watching the video or read more below.

Convenient to use

When Ethan’s parents, Carrie and Mike, heard that NITYR was bioequivalent1 to Ethan’s current medication Orfadin*, but had some advantages that may be more convenient to them, they wanted to know more.

When we signed up for the 30-day Free NITYR Program2, it was really quick and easy,” says Carrie. “It would make transportation and travel easier for our family and, hopefully, it was something that our son would be excited about – and he was.

Ethan’s dietician encouraged the family to look into NITYR, as she felt he was ready to swallow a tablet. The small size of the NITYR tablet would be perfect for this.

What I like about NITYR is it’s a really small3 tablet,” says Carrie. “It comes in the size of baby aspirin, and it can be taken with or without food any time of day. It doesn’t need to be refrigerated.

Swallowing whole tablets

Ethan was soon able to swallow the small NITYR tablets without any trouble at all. Like Carrie and Mike, parents of young children should always consult a healthcare professional before getting their child to attempt to swallow a tablet.

My son was really excited to be able to swallow the medication,” says Carrie. “He shows everyone that comes over how big he is, when he gets to take his medication with water. He asks for a crowd! He’s really proud of himself. He feels like a big boy, really independent.

Financial help for medical nutrition and online fitness

Given the unprecedented COVID-19 lockdown that shuts down patient access to wellbeing facilities that may seriously impact the health of HT-1 patients, Cycle has developed a COVID-19 Response Wellbeing Program4 for a limited period of time and only for eligible patients with HT-1.

The COVID-19 Response Wellbeing Program includes a Low Protein Food Program and an Online Fitness Program.

The Low-Protein Diet Food Program4 has been created in partnership with with Ajinomoto Cambrooke that eligible HT-1 patients can redeem against medical nutrition for all products available at Cambrooke’s website.

The Online Fitness Program4 has been created in partnership with the leading fitness organizations in partnership with My Gym and Fit Factory, to provide eligible HT-1 patients of all ages with an on-line live program that they can join to support a healthy exercise routine from home, while most groups classes and gyms are closed across the country.

What I really like about the NITYR Patient Liaison Services is the $400 monthly contribution to Ajinomoto Cambrooke, Inc.," Carrie explains. "It allows us flexibility to order medical foods for our child, who cannot eat a high-protein diet.There are very few foods on the market that are available to kids with tyrosinemia, and this allows him to have access to pasta, rice, ravioli, pizza – all low protein – and it saves our family a lot of financial burden.

Carrie and Mike have a message for other families who are considering moving to NITYR.

For a family that’s unsure about switching to NITYR, I think I simply would say just give it a try. There is nothing to lose, you have everything to gain,” says Mike. “I think it’s important for caregivers to be open to innovation, because we are such a small community that we don’t always get the attention as some other conditions.

"I would tell a new family not to be afraid and to give it a try," adds Carrie. "It was a really positive experience for my son.

1 Data on file: NIT/02/20 2 Free NITYR Program: Patients can try NITYR for 30 days, one time, for free, as long as their doctor prescribes it. Subject to terms and conditions, eligibility criteria, and other federal and state law. Terms and Conditions and eligibility criteria are available at www.nityr.us/offertcs. 3 Data on file: NIT/03/18 4Wellbeing Program (Low-Protein Food Program and Online Fitness Program): Subject to terms and conditions and eligibility criteria. This program is for eligible commercially insured patients only. Not available for government-insured patients and subject to other federal and state law. Terms, Conditions and eligibility criteria is available www.nityr.us/offertcs. *Orfadin is a registered trademark licensed by Sobi, Inc. or its affiliates. Cambrooke is a registered trademark of Ajinomoto Cambrooke, Inc. My Gym is a registered trademark of Gym Consulting LLC. Fit Factory is a registered trademark of Fit Factory LLC.

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