The prevalence of Rare disease in our world is causing a greater impact on our society than ever before. That’s why Global Genes has rallied and supported Shire PLC as they launched the first ever Rare Disease Impact Report. This report uncovers the health, psycho-social and economic impact of rare diseases on patient and medical communities in the United States and United Kingdom.
“This Impact Report brings to light the specific barriers to quality care that exist for patients with rare diseases, particularly the challenges in getting an accurate diagnosis, adequate information and ongoing care,” says Nicole Boice, founder and CEO, Global Genes | RARE Project, a leading rare and genetic disease patient advocacy organization. “I am thrilled that Shire engaged Global Genes in this initiative and hope it will inspire the rare disease community to work together to better meet the needs of rare disease patients and their families.”
This report, which was developed with the aid of an external advisory board of thought leaders in the medical, advocacy, health policy and health economic fields will be certain to make waves at the World Orphan Drug Congress in Washington, DC starting today.