A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors. How do patients prepare themselves for a discussion on…
Scientific advancements in the last decade have yielded promising avenues on multiple fronts, including those related to atypical HUS and other thrombotic microangiopathies. However we’ve now reached a point where…
The Primary aHUS community now understands that there is no accurate record of how many "aHUS" patients there are , but what about the number of people who have had…
What follows is an imagined "dinner party conversation" about atypical hemolytic uremic syndrome (aHUS) among aHUS pioneers—Professor Conrad von Gasser, Professor Tim Goodship, Dr. Lenny Bell. With the author also…
The second part about the insights arising from the RDD25 aHUS video is about the rare disease familial impact. (Note: Part 1 link HERE.) How does it impact and on…
For several years now the naming of our disease has been discussed and new names proposed but nothing official has yet happened to it. It is six months since a…
This is what Grok AI says about aHUS alliance efforts have been to promote Rare Disease Day 2025 awreness, 1. **Video Project Launch**: The aHUS Alliance Global Action team launched…
Since its inception in 2008, and celebrated annually on the last day of February, world Rare Disease Day has been an opportunity to provide information and advocacy for and about…