| Прекрасным будет тот день, когда наше осознание серьёзности заболевания аГУС/кТМА* поможет добиться того, что пациенты во всем мире смогут позволить себе необходимое лечение и снова будут жить нормальной жизнью. (*атипичный гемолитико-уремический синдром / комплементная тромболитическая микроангиепатия) is what the Global aHUS Patients’ Vision , created from the aggregation of patient’s visions in the Rare Disease Day 2020 video , looks like to some one who can understand Russian. The story about how the Vision below came about can be read HERE. When enough aHUS/cTMA awareness helps everyone in the world get affordable access to the right treatment they need to be cured and be normal, it will be a good day.A vision voiced just in English is not enough. There are many languages spoken around the world and those affected by aHUS may only speak one of them but not English. But if “everyone in the world Is to get the affordable access” as envisaged then that needs to be visible in every aHUS patient’s own language. That is why the “Click to support aHUS” button on the alliance global action website, created for aHUS Awareness Day 2019 but left for continuous support, links to the aHUS Global Patients Vision in three languages. So far it has English , French and Spanish language versions of the Vision. Along with her article about the German aHUS patients day webinar (read here), patient advocate Oksana Paulsen provided a German translation; and unexpectedly the Russian translation used above. As aHUS Global Action’s outreach embraces many countries we have decided to offer an open invitation to all patient advocates around the world to provide aHUS Global Action with a translation of the Vision in their own language. So that we can all voice a truly Global aHUS Vision together for all to understand. Use the contact page or e mail: info@ahusallianceaction.org or message us on Facebook or Twitter with your translation and we will add and attribute it to our Support aHUS page. Translations Article No. 351 21 June 2020 |
