An accurate diagnosis may be the first step to improving the care for those living with a rare disease, and their families.,[ 2]
“Diagnosis Doesn't Have to be Rare” campaign aims to highlight the challenging diagnosis journey patients with rare diseases often experience, and calls for improvement in the diagnosis pathway. Under this campaign umbrella, Shire is committing to helping raise awareness of rare diseases,including the diagnosis challenges, and implementing initiatives to support an improved diagnosis journey. As a first step, Shire has launched a series of educational materials highlighting the often challenging rare disease diagnosis journey many patients face. The materials aim to help raise awareness of rare diseases, as knowledge and information are critical to early diagnosis and play a major role in empowering patients and their families. Shire will continue to introduce new initiatives under this campaign umbrella throughout 2016, with activities in partnership with the rare disease community directly aimed at improving the diagnosis journey.
- Engel PA, et al. Physician and patient perceptions regarding physician training in rare diseases: the need for stronger educational initiatives for physicians. Journal of Rare Disorders 2013: Vol. 1, Issue 2.
- EURORDIS. The voice of 12,000 patients. Experiences and expectations of rare disease patients on diagnosis and care in Europe.