The Rare Disease Day video provided an opportunity for aHUS patients around the world to voice what aHUS research was needed , and, in this unique way, brought an extensive…
Patients make appointments to see their primary care physician when a health issue arises, but often more complex cases merit referral to a specialist. Presenting with a wide range…
Especially with very rare diseases such as atypical HUS, medical research and education efforts are keys to unlocking information that’s critical for diagnosis and for management of patient care. It’s…
Feeling sick is difficult enough without going to a doctor’s appointment and learning that the diagnosis might possibly be the rare disease atypical hemolytic uremic syndrome, also known as…
Like the "Rocky" films, the alliance Rare Disease Day video has a follow up version as more people from more countries have asked to be included since the video was…
It’s difficult for rare disease patients to find information about their condition and even more so for patients with medical conditions that affect very small numbers of people, like…
Patient engagement in research is a developing issue. For it to be successful there needs to be a mutual appreciation of the value that can be added by including patients…
An article entitled "An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry" has appeared in the Orphanet Journal of Rare Diseases in which the aHUS alliance has…