Cystinosis is rare, affecting approximately 500 people in the United States and 2,000 worldwide.1 Nephropathic or “classic infantile” cystinosis is the most common and most severe form of the disease.2,3 New medicines and ongoing research have improved the long-term prognosis for those living with nephropathic cystinosis, and people living with the condition can now plan for living into adulthood and leading productive lives.4
“In our experience working alongside people living with rare diseases, we’ve witnessed an increasing resilience to overcome adversity and pursue long-term goals,” said Rob Metz, senior vice president, patient advocacy, Horizon Pharma plc. “We hope that these scholarships will give inspiration to many people living with the daily challenges of nephropathic cystinosis. Global Genes is an ideal partner to lead this effort, given the organization’s track record providing connections and resources for the rare disease community.”
Scholarship applications open Wednesday, January 18, 2017. Applicants must be diagnosed with nephropathic cystinosis and pursuing educational or career development support such as community college, university, beauty school, vocational school, seminars, or special interest courses such as dance, archery, painting and pottery. The scholarship is funded through a grant from Horizon Pharma plc with a maximum scholarship amount of $5,000 and a minimum of ten scholarships to be awarded. Scholarship recipients will be selected by an independent board of reviewers appointed by Global Genes. Learn more and apply at www.globalgenes.org/HNCS.
About Global Genes® – Allies in Rare Disease Global Genes is a leading global rare disease patient advocacy organization. The mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections and support to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.
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. Horizon Pharma 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 the company’s LinkedIn page.