Keeping current with advancements in atypical HUS knowledge is important for patient families as well as clinicians, but that’s no small task. Clinical trials proceed, research gets published, and aHUS experts debate terminology and classification.
Broad issues regarding aHUS information, diagnostic challenges, drug access, disease management affect every nation. Since the first aHUS Awareness Day in 2016 the aHUS Alliance Global Action team has aided visibility and outreach through not only original articles, informational resources, and social media but also through collaborating with other groups and researchers around the world.
As we move past our 2023 campaign on the dedicated account X /Twitter @aHUS24Sept for aHUS Awareness Day, what efforts continue? Well, quite a few, actually. The aHUS Alliance Action team is an international group of volunteers,
USTMA Consortium
The USTMA Consortium hosted an in-person meeting Sept 29th – Oct 1st in Durham NC for TTP and aHUS patients and their families. USTMA efforts include a focus on atypical and TTP clinical and research areas, at various USA locations. In addition to presentations from medical personnel on topics of the latest advancements in TTP and aHUS treatment and therapies, patient organizations were invited to participate. (see the Agenda: www.ustma.org/2023agenda ) Materials created by the aHUS Alliance Global Action team were distributed, to include the latest edition of the aHUS Fact Sheet 2023-Sept-2024 and a ‘quick reference’ sheet of QR Codes to key resources.
We’re grateful that they integrated patient voices, to include authentic inisghts offered by aHUS volunteer advocates and appreciative for the videos created by Taylor Coffman, Jeff Schmidt, and Linda Burke. Thank you to Taylor Coffman for her ‘patient voice’ video soon to appear on the USTMA event playlist; meanwhile you can check out her advocacy on Substack: Rare Disease Girl. Special thanks to Jeff Schmidt, for continued leadership in creation for our aHUS global patients video projects, most recently for aHUS Awareness Day 2023 As the USTMA Consortium completes posting event videos to their YouTube Channel, we offer one of the 3 aHUS patient videos: an overview of topics in Atypical HUS Global Advocacy 2023 https://bit.ly/aHUSadvocacyOverview2023.
World Meningitis Awareness Day (Oct 5th)
Drugs known as complement inhibitors block uncontrolled activation of a part of the body’s immune system. Various rare diseases are treated with complement inhibitors, to include atypical HUS.
Why did we participate in Oct 5th outreach efforts? Vaccines to guard against meningococcal infection are part of the protocol for currently approved aHUS drugs Read more HERE
aHUS global Community Advisory Board
Our next meeting is in Brussels, mid-October 2023. What is the aHUS CAB, and where do their efforts focus? To take a look at what’s involved, visit https://bit.ly/GlobalCABaHUS
National aHUS advocacy is vitally important to form connecting points and to add insight into regional efforts and needs. Read interviews with aHUS advocates in various nations Here.
Recent aHUS Publications which include the ‘Patient Voice’
Clinicians increasingly are becoming aware of the need for rapid and accurate diagnosis of atypical HUS and differential diagnosis of aHUS apart from other conditions which include thrombotic microangiopathy. In the changing field of medicine in the post-pandemic era, some still fall back on the concept of atypical HUS as a ‘kidney disease’.
It’s increasingly apparent of the need for multidisciplinary care teams, since aHUS activity can damage function of any organ and body system. Here’s one article on the topic (note figure 3).
- Yerigeri K, Kadatane S, Mongan K, Boyer O, Burke LLG, Sethi SK, Licht C, Raina R. Atypical Hemolytic-Uremic Syndrome: Genetic Basis, Clinical Manifestations, and a Multidisciplinary Approach to Management. J Multidiscip Healthc. 2023 Aug 4;16:2233-2249. doi: 10.2147/JMDH.S245620. PMID: 37560408; PMCID: PMC10408684. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10408684/
Following that publication is an editorial by one of the co-authors of Yerigeri et al, featuring concerns of aHUS families.
- Burke, L., Sethi, S.K., Boyer, O. et al. Voice of a caregiver: call for action for multidisciplinary teams in the care for children with atypical hemolytic uremic syndrome. Pediatr Nephrol (2023). https://doi.org/10.1007/s00467-023-06158-8 https://link.springer.com/article/10.1007/s00467-023-06158-8
Being an effective aHUS advocate takes much more than describing your personal experiences with this rare disease. What does this mean and what is involved? Read Lessons in aHUS Advocacy HERE We are very grateful to the clinicians and researchers who value patient voices and who have re-defined their patient engagement outlook and practices, and hope that this trend continues.
