Created in collaboration with people living with a UCD, their families, caregivers and healthcare professionals, UCD in Common offers supportive, educational and interactive resources. Awebsite and Facebook page provide shareable videos and lifestyle tips as well as low-protein recipes for people living with a UCD who must restrict their protein intake because of its effect of elevating ammonia levels.
“UCD in Common is a labor of love for those of us who collaborated with Horizon on its creation,” said Guadalupe M., mother of a young daughter with a UCD and one of 13 members of Horizon Pharma’s UCD patient and caregiver working group. “In working together with other families, we noticed many challenges we had in common at different stages of our journey. As the initiative evolves, we’re excited to hear from more families so that we can find strength through our individual experiences and inspire others to confidently face the challenges of managing a UCD.”
A UCD is a rare genetic disorder that affects approximately 1 in 35,000 live births in the United States.1 It is caused by an enzyme deficiency in the urea cycle, a process that is responsible for converting excess ammonia from the bloodstream and ultimately removing it from the body.1 Because of this, people with a UCD experience hyperammonemia, or elevated ammonia levels in their blood that can then reach the brain where it can cause irreversible brain damage, coma or death. UCD symptoms may first occur at any age depending on the severity of the disorder, with more severe defects presenting earlier in life.1
“At Horizon we have a long-term commitment to helping people living with rare diseases in ways that go beyond our medicines, and we’ve used our resources to empower the UCD community to generate ideas and create tools that will help others living with this rare, isolating disease,” said Dave Happel, executive vice president, Orphan Business Unit, Horizon Pharma plc. “We are grateful for the opportunity to work with such a passionate group of patients, caregivers and families whose journeys and insights led to the development of UCD in Common.”
About Horizon Pharma plc
Horizon Pharma plc is a biopharmaceutical company focused on improving patients' lives by identifying, developing, acquiring and commercializing differentiated and accessible medicines that address unmet medical needs. The Company markets 11 medicines through its orphan, rheumatology and primary care business units. For more information, please visit www.horizonpharma.com. Follow @HZNPplc on Twitter or view careers on our LinkedIn page.