The international aHUS Community Advisory Board is a formal organization that strives to represent the views of the aHUS patient community throughout the world, and to provide those insights to researchers, pharma, and other stakeholders. Composed of atypical HUS patients and family caregivers, the aHUS CAB highlights global needs and amplifies the initiatives of national aHUS organizations.
This model for research and industry engagement was developed by the European rare disease organization EURORDIS, and aHUS Community Advisory Board members participated with training sessions through the EURORDIS Training Academy. Bringing together people and groups for effective collaboration in the atypical HUS arena is at the heart of the efforts undertaken by the aHUS Community Advisory Board.
As an independent, international board of patients and family caregivers, the aHUS CAB provided the trained and collective expertise of aHUS advocates to advise in areas of research and development, clinical trials, patient materials and engagement, and access to effective treatments for aHUS worldwide.
After multiple efforts spanning over several years, the aHUS CAB was formalized in early 2022. The inaugural board membership was: Anna Benson (New Zealand), Linda Burke (USA), Dave Deffenbaugh (USA), Margriet Eygenraam (Canada), Kerri Mariani (Australia), Gulin Kayserili (Türkiye), Nihal Ibraham (UAE), Zofia Lisieka (Poland), Pauline Kung (Hong Kong), Christiane Mockenhaupt (Germany) Pamela Notario (Brazil), Tara Sam (Hong Kong), Kamal Shah (India), Jeff Schmidt (USA) and Len Woodward (UK).
It was largely due to the leadership efforts of Len Woodward that this global community board was formed, becoming the first successful international aHUS advocacy group. In 2023, Kerri Mariani became the next head of the aHUS CAB and has further led the group into developing skills for increased effectiveness to reach these goals.
FMI, click HERE to Learn More about the aHUS Community Advisory Board.