Article No: 357
20 July 2020
From its outset the website created by the aHUS alliance sought to connect, inform and collaborate with the aHUS community. At the time very few in that community were even aware it existed. Many still do not know, although increasingly more are finding it for what they need and wherever they may be in the world. The internet is truly a force for good for those with a very rare disease.
To get started, connections were promoted through Facebook and Twitter. Friends and Followers joined in and reach expanded. But in the past year or so, as those who understand what Facebook does, it can take that reach away, based on algorithms which determine what people can see on their timelines. This means that those who used to connect through Facebook no longer do so, being unaware of what is going on in global advocacy, even though they may want to know.
Facebook is doing this to raise revenue from advertising specifically from Corporate and Business Facebook accounts. Its algorithms also affect charitable organisations accounts like Global Action , seeing it as a source of income even though small charities like ours can ill afford to pay. Facebook diminishes the reach until they offer a bigger reach on the payment of an advertising fee. If the offer is not taken up a downward spiral in reach continues.
Less reach less connection , less connection less reach.
So like many health advocacy organisations aHUS alliance Global Action is offering the opportunity of continued connection through a directly e-mailed newsletter. It is called The Global aHUS Advocate. This will be sent out to subscribers periodically to alert them about aHUS news and awareness activity on the website.
Because of privacy rules subscription to The Global Advocate is by ” opt in” which can be completed in seconds by using the subscription link here. (N.B. The e mails provided will be used ONLY for the purpose of sending out Newsletters.
But a copy of the first newsletter can be seen below.
Please share this with anyone who you think would wish to subscribe too.
After four years this website is generating aHUS search referrals in ever increasing numbers because of its extensive and inclusive content about aHUS which may matter to all or just a few.
To continue our progress, we value the connections we have made.
aHUS alliance Global Action
The first copy of The Global Advocate can be read at the following link.