RARE and social—but what does it mean? In a world of global
connectivity, it has never been easier for us to be social far
beyond our immediate neighbours and community networks.
With this comes great possibility and opportunity, but it also
comes with challenges and inherent burdens.
Love it our loathe it, for today’s generations, being social inevitably
involves social media. This can propel both advocacy and industry
onto a global stage amplifying reach and community or customers.
As a digital publication, social media has been one of the greatest
levers in our success. When we first launched in 2016 we were relatively
new to social media as a concept. We were blown away when we
published that first edition and discovered that within hours it was being
read, not just in the UK, but all around the world. Over 800 people
in the first few hours, from across Europe, the USA, Canada, South
America, Africa and on it went. Fast-forward to today and we reach in
excess of four million people a month with our content, and the global
appetite has grown with us. This reach has only been possible due
to online connectivity, driven largely by our dedication to meeting our
communities where they are—on social media.
But, as I hope this edition highlights, it is vital that in all the excitement
of opportunity that social media brings, none of us lose sight of what
being social really means. The Oxford dictionary defines ‘social’ as
being “concerned with the mutual relations of humans…” It goes further
to say that “man is a social animal”, “unfitted for solitary life”, needing
“companionship, and benefiting from interdependence, division of
labour and as a member of a compound organism, living in organised
communities”.
In short we need meaningful connections to sustain us on our journey
through life. And in the world of rare disease, where isolation can be a
crippling side-affect, those connections can become our life-force.
This edition showcases the best of endeavours in driving those
human connections in industry, academia, advocacy and at the most
fundamental human-to-human level.
We explore the pitfalls of building and sustaining communities, and
unpick the pros and cons of the various tools to aid this. We look at the
personal impact—from achieving more timely diagnosis through online
connection, to the grass roots approach to building communities on
the ground and in-person. We also learn about how communities can
have the power to both build and destroy our self-esteem and sense
of self-worth, and we offer greater insights into how social connectivity
impacts our overall health engagement and experiences. With your
insights on how to navigate the challenges of; online communication
and fundraising in advocacy, creating industry compliant campaigns
and how to stay mindful of respecting and protecting our loved ones
privacy in a world of sharing—we hope this is a catalyst for greater
conversations within your wider organisation, local team and within
your own homes.
Nicola Miller
editor-in-chief
editor@rarerevolutionmagazine.com