Advanced Search
Current and Breaking News for Professionals, Consumers and Media



Click here to learn how to advertise on this site and for ad rates.

Disease Author: Staff Editor Last Updated: Mar 16, 2017 - 3:09:00 PM



Rare Disease Initiative with UCD Patient Community

By Staff Editor
Mar 16, 2017 - 3:05:25 PM



Email Newsletter icon, E-mail Newsletter icon, Email List icon, E-mail List icon Sign up for our Ezine
For Email Marketing you can trust


Email this article
 Printer friendly page

(HealthNewsDigest.com) - DUBLIN, IRELAND – March 16, 2017 – Horizon Pharma plc (NASDAQ: HZNP), today announced the launch of UCD in Common, an initiative for people impacted by a urea cycle disorder (UCD), a rare genetic diseasecharacterized by toxic levels of ammonia in the blood.1

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.

###



Top of Page

HealthNewsDigest.com

Disease
Latest Headlines


+ Cellular Stress in the Brain May Contribute to Non-Alcoholic Fatty Liver Disease
+ Connecticut’s Effective Formula for Cystic Fibrosis Screening
+ Biggest Concerns Inflammatory Bowel Disease Patients Have With Treatments
+ 8 Things to Know About Hepatitis C
+ How To Prevent Brain Disease And Boost Brain Health
+ Faster Feeding May Mean Faster Recovery in Pancreatitis
+ Innovative Treatments for Moyamoya Disease
+ The ABCs of Avoiding Ticks (VIDEO)
+ Uncover Key Role for MicroRNA in Inflammatory Bowel Disease
+ Discovery About How Heart Forms Sheds Light on Deadly Disease



Contact Us | Job Listings | Help | Site Map | About Us
Advertising Information | HND Press Release | Submit Information | Disclaimer

Site hosted by Sanchez Productions