Welcome to Caring with Rare
The Caring with Rare platform.
Caring for someone with a rare condition can feel overwhelming, isolating, and at times, invisible. Caring with Rare is here to change that. This platform is a dedicated space for carers, families, and anyone affected by rare diseases — providing information, real stories, practical resources, and emotional support.
Whether you’re looking for guidance, connection, or reassurance, you’ll find helpful tools and shared experiences right here. Explore the interactive map below to discover stories and resources from others who understand what it means to care with rare.
Explore The Interactive Rare Care Map
Find stories, resources, and information from carers and families in the rare disease community.
Welcome. This map is interactive. You can find more information by clicking on for videos or to get more information. Each signpost has a link to a video explaining what it is. On our website you will find answers to questions like these: Who is a 'carer'? What is a rare disease? And more information.
Understanding
the rare disease
carer journey
the rare disease
carer journey
Hello, this resource has been
developed to support carers of
loved ones with rare conditions.
developed to support carers of
loved ones with rare conditions.
The journey
ahead - tips from
carers
Carer tips from
personal experience.
Self-care and
wellbeing
Resources to help
carers maximise
their wellbeing.
Impact of 'rare
care' on the
family
Ways to enhance
family wellbeing
while living with a
rare condition.
Connecting
with
others
Learn about other
carers' experiences
or share your own.
Resources to
help navigate the
health and social
care system
Links to services and contacts
and opportunities to be part
of research.
Practical
information to
help navigate
finances
Resources include
carer's allowance,
travel support, and
equipment funding.
Going out -
accessible
places and
events
Ideas and
information
about accessible
spaces, facilities
and events in NI.
Not sure if you
are a carer? Watch these
videos:
Click to go to video page
“We do
virtual meetups, it's
with parents like me.”
Carer
This map was
crafted and driven by
carer voices sharing their
experiences of caring for
a loved one with a
rare disease.
The carer journey is often
complex with many barriers.
complex with many barriers.
Introducing Caring with Rare
Introducing the Caring with Rare resource
AJ McKnightIntroduction
Sam RobinsonIntroduction
Lynne LohfeldIntroduction
Olinda SantinIntroduction
Share Your Rare Story
Every caregiving journey is unique and your story matters. Whether you’re a family member, friend, or professional supporting someone with a rare disease, we invite you to share your experiences. Your story could offer comfort, insight, or hope to others walking a similar path.
Submit Your Story
