Article No. 337
2 April 2020
When news about the rare disease ‘atypical hemolytic uremic syndrome’ (atypical HUS) appears in medical journals or social media, the aHUS Alliance seeks to highlight information and efforts of broad interest to the global community and its stakeholders. We amplify the voices of atypical HUS families and patient organizations in over 30 countries, and it is in this role that we present content that was recently posted on social media by Margriet Eygenraam (CA) and Jeff Schmidt (USA), who together serve as representatives of aHUS families at meetings of the Scientific Advisory Board of the global aHUS Registry.
Below are their comments and slides, which they posted on the aHUS Alliance Facebook page on 27 March 2020. We recognize the contributions made to expanding the knowledge base about aHUS, and present that content for greater visibility.
“The Scientific Advisory Board (SAB) is a group of International aHUS clinical experts who oversee the global aHUS Registry. More info about the aHUS registry can be found at this link: https://ahusallianceaction.org/9249-2/
Normally the SAB holds in-person meetings twice a year, but on Dec 6 & 7, 2019 they held an extra meeting in Miami, Florida where the aHUS Registry and its future was discussed extensively. Jeff Schmidt and Margriet Eygenraam attended this meeting as the new SAB patient representatives, taking over from Len Woodward, who held this position for several years. Since this was the first SAB meeting Jeff and Margriet attended, it was an amazing learning experience and opportunity to meet world renowned aHUS experts that are dedicating their lives helping to improve patient’s lives around the world. Even though there was a lot discussed at the meeting, we tried to narrow it down into a summary to share with our global aHUS community.
Please find the summary slides attached. If you have any questions or comments about this summary or the aHUS registry in general, please don’t hesitate to send an email to either Jeff (firstname.lastname@example.org) or Margriet (email@example.com) and we will try to provide an answer.
As a side note, the SAB meeting that was planned for the spring has been cancelled in light of the current COVID-19 crisis. They are working on a new date in the fall.”