On February 28, 2022, 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 2007 as a EURORDIS initiative to raise rare disease awareness, and now it is truly a global event
Five years ago the aHUS Alliance global action team created a project for 2017 Rare Disease Day which invited our global aHUS family to ask a question about atypical HUS that they’d like answered. This project was led by Jeff Schmidt (aHUS volunteer, USA) and resulted in a video slideshow of 80 entries from 18 countries. (Click HERE to view our 2017 Rare Disease Day project.). The Rare Disease Day 2017 video provided an opportunity for aHUS patients around the world to voice what aHUS answers are needed, and in this unique way, brought an extensive and varied response from aHUS patients and families from several countries.
UPDATE: We invite you to view this completed project
Atypical HUS: 2022 Rare Disease Day Project
On 28 February 2022, we will premiere a new Rare Disease Day video slideshow which will showcase questions from our global atypical HUS community.
But we need the participation aHUS patients and family caregivers around the world to do so. Only those actually affected by this rare disease can offer questions that can provide the medical community and research teams clear and authentic voices of what matters to aHUS families. Many people in nations around the world have been diagnosed with aHUS in the last five years since we asked people in the aHUS community to finish this statement: “I would like to know…”
If you’re a person living with atypical HUS, or have a loved one diagnosed with aHUS, we need your participation is vital to make this project both meaningful and informative. We welcome ALL those affected by aHUS from our global community to join in this 2022 Rare Disease Day project. Here’s How:
Send the following to Jeff Schmidt at firstname.lastname@example.org
– Your Photo
– Name & where you are from
– Your aHUS Question.
The aHUS Alliance global action team will provide information in answer to some questions, but importantly we will reach out to the experts to help provide in depth answers to aHUS questions which may arise from your entries for this 2020 Rare Disease Day project.
Submission deadline is 17 February 2022, but the earlier you can turn in your entry the better!
In order to raise awareness leading up to Rare Disease Day we are hoping you will start sending in your submissions right away (don’t wait until the end) so we can post one or two a day from now until Rare Disease Day.
Here’s a look at our 2021 Rare Disease Day slideshow, and some resources that you can post or share to rare visibility for atypical HUS.
Rare Disease Day with the global aHUS Community
Info, Assets & Images