Today is Rare Disease Day, an awareness initiative for those with rare diseases coordinated world-wide by Eurordis, a non-governmental, patient-driven alliance of patient organisations representing more than 434 rare disease patient organisations in over 43 countries.
From the press release:
'Rare diseases are life-threatening or chronically debilitating diseases. Due to the low prevalence of each disease, medical experts are rate, knowledge is scarce, care offering inadequate and research limited. Very few cures exist. While the diseases are rare, collectively they affect more than 60 million people in Europe and the US alone. Despite their great overall number, rare diseases patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.'
The focus this year will be on the health inequalities faced by many rare disease patients.
"Most rare disease patients spend years wandering through the maze
of health systems to find an accurate diagnosis. Many are fighting to
obtain life-saving treatments or to be reimbursed by their health
authorities. Others are denied access to services and to disability
compensations. They have further difficulties finding a job, getting
into school, obtaining a loan or accessing life insurance."
Yann Le Cam, CEO, EURORDIS
How can you help?
Get involved by bringing this day to attention.
Visit the Rare Disease Day website.
Have a rare disease yourself? Consider sharing your story.