One day several years ago, Linda Burke learned about a disease called aHUS. Her son was ill and that was the diagnosis she was told. Her reaction was to develop her own personal patient engagement. To learn and become informed about an illness is the bedrock of personal patient engagement. She looked around and there was little information of aHUS. She thought that was wrong.
As the disease took it toll on her family,as it does for many of us ,she took upon her self the job of ensuring that no other family should be in the position of not being able to get information for their personal encounter with aHUS. Linda did that by moving from personal to public aHUS patient engagement; and this website is a testimony to that.
Hundreds of people have become members of this website , not the Foundation as that organisation it is not an association, and thousands more have visited this site to take away from it their own opportunity to develop their personal aHUS patient engagement; and if you look at some of the members names some have chosen to move into public aHUS patient engagement themselves.
This website has become encyclopedic and inclusive; but its days appear to be numbered, and thus the first era of public aHUS patient engagement will end with it.
Many new to aHUS now come to it in different circumstances than in the past; not least that these days there is an enormous amount of information about our disease. They do not face what Linda did and so their patient engagement starts from a higher base and they can take so much for granted.
I have, like many others, got to know Linda well over the last few years and got to understand and appreciate her motivation and ability. I am also appreciative that she works with the the aHUS alliance to continue to contribute to public aHUS patient engagement, but now at a truly global level.
http://www.ahusallianceaction.org/ is becoming an exciting place to connect, inform and collaborate for good to come together. A place where public aHUS patient engagement moves to a new era and Linda Burke is a respected and key part of it.