The International Association of People Affected by Lipodystrophies and Their Relatives (AELIP) is joining the campaign ofthe Ibero-American Alliance for Rare Diseases (ALIBER) for Rare Disease Day, which will be commemorated on February 28th.
In line with the mission of EURORDIS (the European Organisation for Rare Diseases), the ALIBER campaign has the following for a slogan: “Integral attention to rare and orphan diseases: a global challenge,” and the hashtags chosen to accompany the information spread on social media are #AtenciónIntegralER (#IntegralAttentionRD), #AtenciónIntegralEH (#IntegralAttentionOD), #AtenciónIntegralEPOF(#IntegralAttentionRD), and #2019ALIBER.
ALIBER reminds us that, according to WHO (the World Health Organization), 7% of the world’s population suffers from a rare disease, while the European Union estimates that five in every 10,000 residents have arare disease of some kind—meaning that about 47 million people living in Ibero-America are affected.
Among other things, the purpose of the campaign is to create awareness among the general public and among decisionmakers of rare diseases and their impact on patients’ lives, as well as to raise awareness amongpolicy makers, public authorities, industry representatives, health professionals, and anyone with a genuine interest in rare diseases.
