Shire has announced a new initiative, the Shire Rare Disease Impact Report, that will help research the health, psycho-social, societal and economic impact of rare diseases in patient and medical communities. This report aims to detail the unique challenges facing the rare disease community in areas such as diagnosis, scientific understanding, treatment options and social services.
Global Genes | R.A.R.E. Project will be working directly with Shire to reach out to patients, families and caregivers in the rare disease community to distribute this survey. The comprehensive results of these surveys will be published in the first half of 2013.
“Despite the progress that has been made over the past few decades in the rare disease space, there is still an urgent need to better understand this community and its needs,” says Nicole Boice, founder and CEO, Global Genes | R.A.R.E. Project. “I’m thrilled to be involved in the development of this Rare Disease Impact Report as its findings will help elevate awareness for the rare disease community and guide future research and education for affected patients and their families.”