Our aHUS Alliance Global Action team takes to heart our mission to “Inform. Connect. Collaborate” on ideas and initiatives across all areas of interest to the atypical HUS community. Here’s one such example we’d like to share:
AIRG-Switzerland, the Association for Information and Research on Genetic Kidney Diseases, is part of a network begun in France in 1988 by doctors and families to create a network where medical knowledge was enriched by the experience and lives of families affected by genetic kidney diseases. All volunteers, together advance information and support local research.
In 2004 the AIRG-Suisse association was founded as a national branch of this European association.
Here we highlight an AIRG-Suisse effort that is open now until 20 November 2024 a survey online of the patients’ perceptions of aHUS, including issues around pregnancy, genetic screening in healthy individuals, and new drugs in development. Prof. Fadi Fakhouri MD, PhD. and his colleagues have created a project with this patients’ association, which connects people and groups in Switzerland, France and Belgium. If his name sounds familiar, Dr Fakhouri’s impact on aHUS research has been extensive on topics such as diagnosis and pregnancy. AIRG has been active in the aHUS space, with a booklet available on our website page: SHUa – en Française.
This project is fully funded by the patients’ association AIRG, independently of any pharmaceutical company. Prof. Fakhouri is an independent doctor on the global aHUS Registry Scientific Advisory Board (SAB) which does research on the data collected by the aHUS Registry and supplies valuable information for all interested and/or affected by atypical HUS.
Their survey, intended for patients and caregivers, is available in 6 languages (French, English, Spanish, Portuguese, Italian, and German).
Please consider filling out the AIRG survey to provide insights as an advocacy effort which impacts global aHUS research. Their survey will be open until November 20th, 2024.
Here are the links to the various languages:
1. Cette enquête s’intéresse aux attentes des patients atteints de SHU atypique concernant le diagnosstic de leur maladie, son traitement et son impact sur leur qualité de vie. Elle a été financée par et développée avec une association de pateints atteints de maladies rénales génétiques rares (AIRG Suisse).
2. This survey concerns patients’ expectations regarding atypical HUS diagnosis, treatment and impact on quality of life. It has been funded by and developed with an association of patients with rare genetic kidney disorders (AIRG Suisse).
3. Esta encuesta aborda las expectativas de los pacientes con respecto al diagnóstico, el tratamiento y el impacto en la calidad de vida del SUH atípico. Ha sido financiado y desarrollado con una asociación de pacientes (AIRG Suisse).
4. Este inquérito diz respeito às expectativas dos doentes relativamente ao diagnóstico, tratamento e impacto na qualidade de vida da SHU atípica. Foi financiado e desenvolvido por uma associação de doentes (AIRG Suisse).
5. Questa indagine riguarda le aspettative dei pazienti in merito alla diagnosi, al trattamento e all’impatto della SEU atipica sulla qualità di vita. È stata finanziata e sviluppata in collaborazione con un’associazione di pazienti (AIRG Suisse).
6. Diese Umfrage befasst sich mit den Erwartungen der Patienten hinsichtlich der Diagnose, Behandlung und Lebensqualität mit atypischem HUS. Das Projekt wurde von einer Patientenorganisation für seltene genetische Nierenerkrankungen (AIRG Suisse) finanziert und gemeinsam entwickelt.
Please Note: aHUS Alliance Global Action is dedicated to supporting patients and patient organizations, as well as clinicians and atypical HUS research teams. We do not support for-profit efforts in the aHUS or rare disease space, and our website content remains independent and without implied endorsements.