We’re pleased to announce the theme of ‘Capabilities & Possibilities’ as a focus to mark the 9th annual aHUS Awareness Day on Sunday 24 September 2023. In addition to participation by aHUS families and advocates around the world, we welcome and invite individuals, companies, and groups to join in this opportunity to share information and raise awareness for the rare disease atypical Hemolytic Uremic Syndrome atypical HUS).
People affected by aHUS face many challenges, but it’s important to recognize that patients are people – people who are capable and determined, with goals and talents, and fully involved with their communities, friends, and families. And that’s what our 2023 theme for aHUS Awareness Day is all about, a showcase to highlight all that we can do currently and a spotlight to illuminate pathways for a brighter future ahead for aHUS patients.
Looking for aHUS Awareness Day Info & Resources?
Follow our 2023 Sept Campaign on Twitter @aHUS24Sept #aHUS24Sept
Images, Press Kit & More: Visit this link! https://bit.ly/aHUSdayInfo
What is aHUS Awareness Day? In 2015 the aHUS Alliance created the 1st aHUS Awareness Day to raise visibility about the rare disease atypical hemolytic uremic syndrome (atypical HUS). Since then, the aHUS Alliance global action team has led this annual 24 September campaign with creation of informational graphics, fact sheets, and resources to serve the needs of patients and caregivers as well as clinicians and the general public. Currently there are over 30 nations with aHUS advocacy groups worldwide, and this annual 24 Sept campaign for aHUS Awareness Day serves to both unite and amplify patient voices about issues and needs within the atypical HUS global community. (Why 24 Sept? Learn More about aHUS Day)
What is aHUS? Atypical Hemolytic Uremic Syndrome is a life-threatening disease characterized by the systemic formation of blood clots throughout the body potentially causing damage to the kidneys and other organs, with complications that may include serious or fatal events including stroke, cardiac issues, and kidney failure. This rare type of thrombotic microangiopathy (TMA) affects both adults and children and is often associated with an uncontrolled activation of the complement system, part of the body’s protective immune system. (Know aHUS, 3 languages. FMI: aHUS Resources)
aHUS Day: Invitation to Researchers, Academics & Clinical Professionals Individuals, families, medical teams, service groups, researchers, and businesses around the world are all welcome to actively participate in raising awareness for atypical HUS.
Is there new research underway, with potential to improve the quality of life for aHUS patients? There are clinical trials in progress, with more in preclinical stages of R&D drug pipelines, and the aHUS community would benefit by hearing more about these. What opportunities exist for ‘MedEd’ at your hospital or university program for topics in the aHUS arena, such as multidisciplinary TMA teams, complement disease, or diagnosing atypical HUS?
Consider creating images or videos that provide information about aHUS, or atypical HUS as a TMA. People with aHUS often are treated with plasma, so we encourage your community, school, or service group to host a local blood drive. If you’re involved with programs at a teaching hospital or clinical, consider hosting a ‘Med Ed’ learning event or Grand Rounds involving aHUS as a focus. Clinical trial teams are invited to share their progress by highlighting information about drug discovery stages or study results. Let us know your plans and questions as early as possible, so we can promote your efforts by sharing photos and otherwise highlight your contribution to aHUS Awareness Day. E: info@aHUSallianceAction.org
Our special aHUS Day 2023 Project for aHUS Patients & their Family
Project Lead: Jeff Schmidt (USA)
UPDATE: Click the Link to Watch this Finished Project!
(Note: Our 2023 project is complete & entries are closed – thanks to all participants. Directions remain archived below.)
We invite our global community of aHUS familes to join in the “celebration” of aHUS Awareness Day by participating in a video project. This year’s project will be one of hope, telling the world “I May Have aHUS But Look What I Can Do!” Share an achievement, ability, goal, talent, activity or something you can do regardless of the fact that you have aHUS. For those caregivers who want to participate, please participate with a response to a similar prompt, “My Family Is Affected by aHUS But Look What I Can Do!”
We welcome ALL those affected by atypical HUS throughout the world to join in this project. To participate, send in the following and we will create your slide:
– Name & where you are from
– 1 photo
– Something you can do regardless of the effects of aHUS on your life (max 40 words)
Thanks to Kamal Shah from India for starting us off. Congratulations to Kamal for becoming a published author. We encourage you to order his inspiring book! (ISBN-13: 9780670097968 Penguin Random House. Silver Lining: Overcoming Adversity to Build NephroPlus- Asia’s Largest Dialysis Provider)
Here’s my own slide, as someone who has a family member diagnosed with aHUS.
Please start sending in your submissions to jeff@ahusallianceaction.org as soon as today so we can post a steady stream of slides leading up to aHUS Awareness Day. This will help us raise awareness of aHUS around the world for the next couple of months!
Submissions are due by September 17, 2023 to allow time to put this project together, but early entries are appreciated so begin now!
