Global aHUS Patients’ Research Agenda
The aHUS Alliance, an umbrella group of aHUS advocates and patient groups in over 30 nations, launched its aHUS Global Patients’ Research Agenda on Rare Disease Day 2019. An international project developed over 4 years, the aHUS Global Patients’ Research Agenda lists 15 central questions grouped into 5 main categories: Causes and Precautions, Diagnosis, Treatment, Impact: Clinical/Psychological, and Impact: Socio-Economic.
The aHUS Global Patients’ Research Agenda was crafted using input from an alliance affiliates group in 2015, survey data from the 2016 aHUS Global Poll, and international entries from aHUS patients and caregivers for the aHUS Alliance 2017 Rare Disease Day video project.
The importance of the aHUS Global Patients’ Research Agenda was described in an aHUS Alliance video and it is available in 3 languages: EN, ES, and FR.
ES: Spanish Language Version
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Descargue la Agenda pdf en español
(Translation courtesy of Merche Forte, Spain)
FR: French Language Version
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(Translation courtesy of Nicolas Mullier, France)
aHUS Alliance: aHUS Global Polls
*2020 aHUS Global Poll – Current initiatives Underway*
The aHUS Alliance launched a worldwide poll of aHUS patients and caregivers of pediatric patients to mark Rare Disease Day 2016 (29 February). 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.
With 233 respondents from 23 nations, the 2016 aHUS global poll remained open until 15 April to allow patients to access poll questions in 6 different languages: English, Spanish, French, Italian, Russian, and Japanese. FMI: 2016 aHUS Global Poll Insights
Polls & Data
Poll QUESTIONS from the 2016 aHUS Global Poll
2016 aHUS Poll Results (Webinar) – Hosted by RareConnect, with commentary by Dr. Christoph Licht
aHUS Alliance “Patient Voice, 2016 Poll – Outreach & Webinar Registration
Mid-point Poll Results – RareConnect, Article
European aHUS Patients’ Voice – 2016 poll, EU Results (pdf)
Research & Registries – 2016 poll, on Patient Registry Insights (pdf)