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.

In ENGLISH:  aHUS Global Patients’ Research Agenda, PDF 

ES:  Spanish Language Version

Lea esta página en español

Agenda Investigación de Pacientes Globales de SHUa

Descargue la Agenda pdf en español

ES:  aHUS Patients’ Global Research Agenda.pdf

(Translation courtesy of Merche Forte, Spain)

FR:  French Language Version

Programme de Recherche Mondial pour les Patients SHUa

Cliquez sur le lien ci-dessous afin de télécharger une version imprimable

FR  aHUS Global Patients’ Research Agenda pdf

(Translation courtesy of Nicolas Mullier, France)

Click the Image –  Watch the YouTube Video

The Global aHUS Patients’ Research Agenda

What is it & Why is it Important?

Take an in-depth look into issues that patients & their families feel need more research: 

Exploring the Global aHUS Patients’ Research Agenda: A Series of Articles

aHUS Alliance:  aHUS Global Polls

2024 Survey:  The  Rare Disease Experience of Atypical HUS Patients & Families – Ten Years On

Atypical HUS Diagnosis:  2021 Survey of Patient Experiences

aHUS Global Action – Patient & Caregiver Insights & Pathways

“The patient’s journey to aHUS diagnosis is as individual as the patients themselves.”

The aHUS alliance Global Action conducted a survey to provide an the opportunity for adult patients and aHUS pediatric caregivers around the world to share their own experience and perception of the aHUS diagnosis process.
Open from 25 November 2020 through 19 January 2021, the survey goals were to capture diagnosis process timelines, aHUS symptom severity and its impact on health. The 45 question poll provided the opportunity to gain more understanding of the atypical HUS diagnosis pathway and what patients thought or felt about their experiences.  Greater awareness of this very rare disease can foster more rapid and accurate diagnosis of atypical HUS, which may lead to research advancements and promote better patient outcomes. Collectively that evidence of patient perceptions can be used to inform, educate and help shape better diagnosis experiences for those yet to suffer an aHUS onset.

INFO & RESULTS from our 2021 Survey on the aHUS Patient Diagnostic Experience 

Poll QUESTIONS:  Click HERE to View the 2021 aHUS Diagnostic Survey tool 

2021 aHUS Global Poll: Background & Purpose- CONNECTING THE DOTS

1st Report (issued 24 Sept 2021) – Article w/ Background   REPORT 1 (pdf):  Patients’ experience and perception of the aHUS diagnostic process  

2nd Report (issued 18 Dec 2021) – Article w/ Background   REPORT 2 (pdf):  Patients’ experience and perception of the aHUS diagnostic process  

3rd Report (issued 28 Feb 2022) – Article w/ Background  REPORT 3 (pdf): Patients’ experience of specialist care and the diagnosis decision

4th Report  (issued 10 June 2022)  Article w/ Background  REPORT 4 (pdf) Impact of process event and patient
demographic variables on process outcomes


2016 aHUS Global Poll

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

Results: GRAPHS and Info for Questions 1-15
Results: GRAPHS and Info for Questions 16-30
Results: GRAPHS and Info for Questions 31-45

Other Assets
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)

2014 aHUS Global Poll – in partnership with RareConnect

Open from 17 February to 7 March 2014, the survey provided information and insights from 214 respondents, replying in 6 different languages across 17 nations.
Living with Atypical Hemolytic Uremic Syndrome Poll Results (slides, from
2014 aHUS Global Poll – a commentary on the Data
2014 Poll – Infograhic