rare disease day

CVBF supports Rare Disease Day: Join us in making the voice of rare diseases heard

29 February 2016 marks the ninth international Rare Disease Day coordinated by EURORDIS. A call to solidarity and to the acknowledgement of rare diseases as a real problem, not to be dismissed under the veil of indifference.  On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the slogan “Join us in making the voice of rare diseases heard”. This year’s theme “Patient Voice” makes reference to and tries to bring to light and public appreciation the efforts made by rare disease patients, by their families and friends, recognizing the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers. […]

2017-01-03T11:18:02+00:00 27/01/2016|Categories: News|Tags: , , , |