[gdlr_text_align class=”justify” ]With the annual Rare Disease day approaching on Feb 28th 2014, general public, policy-makers, health professionals and researchers are gathering across the world to spread awareness on the origin and impact of various rare diseases that affect millions of people. Rare Disease Day has been organized since 2008 by EURORDIS, a patient-oriented alliance that represents 614 rare disease organizations across 58 countries in Europe. The rare disease ambassador for this year will be Sean Ferrer Hepburn, the eldest son of late actress Audrey Hepburn, who passed away due to rare cancer, Pseudomyxoma adenocarcinoma, a disease that affects only one in a million individuals.
Our team at AstridBio has addressed a need to better support scientific research relating to rare disease discovery. We have developed the SmartBiobank, a free data-management software that supports rare disease data-collection and sharing. Due to limited patient data available on a particular rare disease in one given country, Smartbiobank allows for collaboration among various research groups to merge and share scarce data. Supporting research projects relating to rare diseases will allow for increased scientific knowledge leading to earlier diagnosis and better treatment of patients.
We extend our support for this great incentive for people to Join Together for Better Care of these individuals living with a rare disease.