RARE Siblings
As someone who is fortunate to be one of five siblings I count
myself as immensely blessed. I have grown up surrounded
by ready made best friends. They have challenged me,
made me laugh uncontrollably, and been by my side at every
significant milestone of my life; whether that be in person or at
the end of the phone. Our siblings are with us on this ride called
life. At their best our siblings are our greatest champions, our
‘ride or die’ who will always have our back and are often our most
enduring relationship throughout our lives.
Sibling relationships are also amongst the most complex, bridging
from infancy, childhood, adolescence and into adulthood. They
see the best of us and the worst of us. And sometimes there is an
even greater layer of complexity thrown into the mix.
In some sibling relationships, trauma and health challenges leave
their mark. None more so is this evident than in the rare disease
community. Rare disease often asks families to embrace the
extraordinary and accept new and unexpected normals. This not
only affects the individual but their whole family unit and naturally
RARE siblings are a large part of that.
This whole edition is a joyful celebration of these unsung heroes—
rare siblings. Building on our 2023 Impact of RARE disease on
sibling experience, report, supported by Alexion, AstraZeneca
Rare Disease, we are thrilled to again be collaborating with them
to bring you this celebratory edition.
This edition is given over to the voices that are seldom heard—the
voices of our rare and super siblings. Within, you will find candid
stories from siblings of all ages and backgrounds, detailing the
lived experiences and the breadth of impact on siblings. This
includes the emotional impact, along with significant practical
implications of being part of a rare disease family.
These stories really shine a light on just how involved rare siblings
can be; whether that is in a caregiving role or as a powerful voice
and advocate for their brothers and sisters. They also share some
of their many selfless acts which include being uprooted from
all they love and know to pursue cross-border treatment, or the
ultimate selfless act of sibling-to-sibling transplants in a quest to
save the life of their beloved sibling.
It is important too, that we celebrate the amazing work being
delivered globally by organisations who are responding to this
emerging issue by being a vital lifeline for rare siblings—a place
to belong where shared experiences can help combat isolation
and where resources can be a guiding light.
Please join me and the RARE Rev community in:
Honouring our super siblings!
Nicola Miller
editor-in-chief
editor@rarerevolutionmagazine.com
