Zoom has helped with keeping aHUS advocacy going during the restrictions resulting from the COVID pandemic.
Starting a zoom meeting always seem to involve problems with individuals struggling with audio and video connections, necessitating that high tech resolution action of “switching it off and switching it back on again”
But live aHUS events cannot be surpassed. Over the past six months the author has gradually been immersed again in “in person” events.
Now there is to be the first in person ( plus social media) event for US aHUS patients and their families.
It is to be held in Baltimore, Maryland between the 28th and 30th April 2023 and is organised by the aHUS Foundation.
These events were ubiquitous before COVID and had been for many years.
Now they begin again after three years.
Live aHUS conferences for patients and families connected to what is an ultra rare disease bring home the reality that there are also others like you who really know what it means.
Those who have shared the experience. Who have walked the talk. And whilst there will always be some differences there are common shared themes to talk about and listen to and learn.
A conference is a social event in its self. But built into the Foundation’s conference design is time for meeting with others in informal gatherings around “ the conference”. To enjoy a moment of being with people who like your self have gone “ through the aHUS mill” and to be understood perhaps for the first time. There is a sense of relief.
There is an atmosphere which generates at gatherings of aHUS people where ever those meeting may be held in the world. An “aHUS Buzz”
And the more aHUS people you meet and get to know their individual backstory the more you recognise that they are just like others you have met else where in the world.
All of that cannot happen on zoom.
There is lot of aHUS information these days. Some might say too much. Agreed. To read it all is impossible.
So why have presentations at conferences. A good question. Someone who has been to several conferences might be well informed about aHUS . But in the aHUS community people are continually adding to it and are starting to find out about it. So explanatory sessions are important and welcome.
Those who have been around a long time may find talks about the basics unfulfilling but things are continually progressing in “aHUSland” and at conferences there will also always be new slants and angles about all things aHUS which can be learned.
The Batimore aHUS conference will be no different. The conference programme at the following link exemplifies it all. Registration to attend is open to all with connections to aHUS. aHUS Foundation Baltimore Conference Registration
The author is planning to attend his first US patient conference since Iowa in 2014 and will be a speaker, talking about why I am there!
But mostly I will be looking forward to listening and learning more,whilst having some fun.
Article No. 569
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