With 233 respondents from 23 nations, the 2016 aHUS Global Poll gathered data from adult aHUS patients and pediatric caregivers to provide information about their experiences with atypical HUS. This effort was launched on world Rare Disease Day in 2016 and was open from 28 February through 15 April and which allowed patients to access poll questions in 6 different languages: English, Spanish, French, Italian, Russian, and Japanese. The 2016 global poll questions were suggested from various sources, to include topics from the London 2015 aHUS Alliance multi-national meeting of patient organizations, online discussions across aHUS social media outlets, and interactions with atypical HUS researchers – all in conjunction with input from various interfaces within the aHUS arena. Additionally, some poll items were designed to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world. All nations within the aHUS Alliance were invited to participate on the 2016 survey subcommittee and were encouraged to be involved with multiple aspects of the 2016 aHUS global poll, providing an international patient voice for this very rare disease.
Poll questions included common themes familiar to patients with rare diseases and echoing broadly on Rare Disease Day: barriers to diagnosis, access to treatment, availability of genetic testing, need for increased research efforts, participation in registries and clinical trials, and better/more information about their rare disease. A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations.