Thank You to all Participants! View the completed
Rare Disease Day 2024 project here
While Rare Disease Day is marked each year on the last day of February, 2024 is a ‘Leap Year’ so this annual event will fall on a Leap Day (Thursday, 29 Feb 2024). The aHUS Alliance invites all of our global aHUS family to join together on February 29, 2024 to help raise awareness of aHUS.
Last year aHUS patients and family caregivers from 14 nations participated – let’s make our voices heard and top that by joining in! Details & supporting materials are below.
What exactly is world Rare Disease Day?
On February 29, 2024, the world will join together to raise awareness for rare diseases like atypical HUS. Recognized annually on the last day of February, Rare Disease Day encourages patients and their families – as well as medical professionals, researchers, government officials, and companies – to join together and focus attention on rare diseases and how they impact people’s lives. Rare Disease Day began in 2008 as a EURORDIS initiative to raise rare disease awareness, and now it is truly a global event.
The aHUS Alliance is an informal ‘umbrella group’ of aHUS advocates and patient organizations in over 30 nations. Recognized as a charitable non-profit (legal registration No. 1167904) that supports the ideals of an alliance of aHUS advocacy, the aHUS Alliance Global Action team encourages all atypical HUS advocates to join in each world Rare Disease Day through its creation of articles and graphics which highlight key issues and information with specific focus on aspects within the atypical HUS arena.
Rare Disease Day – IMAGES & Graphics Gallery (Orignal Content, created by the aHUS Alliance Global Action team)
Visit our Info Centre’s tab for Rare Disease Day & aHUS Awareness Day HERE, for a wide array of past projects as well as other resources.
Our thanks to Jeff Schmidt, who has continued to lead these important insights into authentic snapshots of what it means to be living with atypical HUS. We’re pleased to announce details for the aHUS global community project for Rare Disease Day 2024.
Below is the project explanation & directions for Participants
2024 global aHUS community project for Rare Disease Day – Directed by project lead Jeff Schmidt
For Rare Disease Day 2024, to be held on an ‘extra rare’ leap day of 29 February, this year’s project asks our global aHUS family to tell us your wish for treatment. This can be anything. This wish does not have to be for treatments available or in the pipeline. We’d like to know things like how you would like this treatment administered, how often, and so on.
It would be great if we could use this video to let the researchers know what our community would like to see in future treatments. Our collective voice is very powerful. Those developing drugs to treat aHUS should have insight into what we consider to be desirable characteristics in treatment and/or disease management.
Send in:
– Name and where you are from
– One photo
– Your wish for a treatment (maximum 50 words)
Your personalized slide will be created. For this aHUS project for Rare Disease Day 2024, we’ll have added an original music composition and post this global aHUS community slide show featuring entries from aHUS from families in countries all over the world. Below is a sample slide.
Please start sending your entry information now so each personalized slide can be posted, one each day up until Rare Disease Day where the collection will be made into a video. This way we can raise awareness for the next 2 months.
Submit the details as requested above to Jeff Schmidt via email, at jeff@ahusallianceaction.org
Submissions are due by the end of 22 Feb 2024 to allow time to put this together. Thank you for participating and adding your voice to this project!
