The aHUS Alliance of patient organizations announced on 28 May 2016 the launch of an aHUS global website that will connect, inform and and encourage collaboration among stakeholders within the global aHUS community, for the benefit of all those affected by aHUS. Visit www.ahusallianceaction.org to view this portal of worldwide aHUS connectivity.
While national aHUS advocacy groups remain paramount for supporting aHUS patients and their families in each country, the aHUS Alliance is there to support them through education and sharing of knowledge, as well as to provide links to international aHUS clinical and research networks.
“This website will also reflect and demonstrate the action being taken around the world to raise the profile of our rare disease, and the ways to deal with its impact on so many lives.” – from the launch blog.
Follow aHUS global news & updates on Twitter @aHUSallianceAct
Follow the campaign for international aHUS Awareness Day (Sept 24) on Twitter @aHUS24Sept