It will be Rare Disease Day on 28th February 2025.
A day to raise awareness of rare diseases generally and also of aHUS, which is a very rare disease.
aHUS people around the world may be planning to do something in the own town or city or online to mark the day.
aHUS alliance Global Action supports an established way to raise rare disease awareness day each year, and which encourages as many aHUS folk as possible to join the global aHUS TEAM to do it together.
Our “RDD Video”
It has been produced each year since 2016 by Jeff Schmidt and the numerous aHUS patients and carers who have supplied him with personal details to make up a collective voice on a specific rare disease topic about living with aHUS.
The people organising International Rare Disease Day have a theme for 2025 of “ More than you can imagine”
The official Rare Disease Day video by the organisers can be viewed HERE.
It makes the point that although rare diseases by definition are rare, there are more people than you can imagine affected by them.
No one knows the actual number. A feature of many rare diseases is hat no complete records are kept of all patients. However estimates when done vary between 300,000,000 and 400,000,000 people living with rare diseases globally .
Big figures! Did you imagine that there might be that many?
At the higher estimate it means that about 1 in 20 out of a global population of over 8,000,000,000 have a rare disease. estimate!
Although aHUS makes up a very small part of those totals. Surviving aHUS patients just creeping into the tens of thousands around the world by Global Action’s “educated guess” of the global aHUS patient population.
That leads us to one of the questions in the aHUS Patients Research Agenda.
Q15 How many aHUS patients are there in my local area, my country and the world and how do they differ?
For RDD25 we would you like to tell us what you know is or what your estimate/guess is of the number of aHUS patients in your Town/City ,or State/Province, or Country. If you don’t know or have no idea you can use your imagination (and then remember to add a few more!).
ALSO living with aHUS has an impact on patients families in many ways. More than can be imagined.
SO, we are also seeking your insights for the numbers of people whose lives are directly impacted by having aHUS in your family, e.g. time for care , journeys to hospital, tasks done like form filling, personal advocacy and other support given, which would not be needed if the aHUS patient had not onset with it.
Such social support from all around the patient is more than can be imagined by those who are not aware and is likely under appreciated.
Probably over a BILLION people globally for rare disease patients.
Let’s have lots of aHUS people from around the world participating in rare disease awareness day this year.
Indeed, let’s have more than we could ever imagine.
Every awareness video adds new insights about aHUS globally which can be used for the community by the community.
So, what Jeff would like to have from you is the following:
Name of aHUS patient:
Their Town/city , State , Country
A picture with the patient in.
As well as completing the grids below and give some personal comments as asked for.
| Those with aHUS in my: | Town /City | State/Province | Country |
| I know of | |||
| I estimate |
Or just tell Jeff if you have “no idea” of the numbers !
Also indicate in one of the boxes below the number impacted in your family :
| 0-5 | 6-10 | More than 10 | |
| Number impacted by aHUS in my family |
and then finally …
| Use the box below to describe what is the biggest impact on the family in no more than 40 words. |
| |
See completed example below:
Thank you for participating.
All to be sent to Jeff by 23rd February 2025 .
The video will be put online for the 28th February 2025 Rare Disease Day.
Article No. 707
