ALISO VIEJO, Calif. and DUBLIN, Ireland – January 17, 2017 – Global Genes® and Horizon Pharma plc (NASDAQ: HZNP) announced the Horizon Nephropathic Cystinosis Scholarship (HNCS), an exclusive opportunity for people living with nephropathic cystinosis to further their education and pursue opportunities toward long-term career goals. Applicants can apply for the scholarship by visiting the Global Genes website.
“Global Genes always looks to partner with organizations that are innovative and doing what is right by the patient,” said Global Genes Founder and CEO, Nicole Boice. “This opportunity with Horizon Pharma is designed for nephropathic cystinosis patients that are passionate about learning. We are offering scholarships to help spark an inspiration through education and offer patients a chance to develop into leaders within their communities.”
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.
3. Nesterova G, Gahl WA. Cystinosis: The evolution of a treatable disease. Pediatr Nephrol. 2013;28:51-59.
4. Cystinosis Research Network. “About.” Web. 21 Dec 2016. https://cystinosis.org/about.