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From YouTube: MARCH 2 2022 Statements Shirley Bond
Description
The Legislative Assembly of British Columbia
3rd Session
42nd Parliament
A
Leader
of
the
official
opposition,
mr
speaker,
this
week
marked
rare
disease
day
every
year.
On
the
last
day
of
february,
people
and
organizations
around
the
world
take
part
in
rare
disease
day,
with
the
primary
goal
of
raising
awareness
about
rare
diseases
and
their
impact
on
patients
and
working
to
improve
lives
through
greater
access
to
treatment.
A
People
from
106
countries
took
part
this
year
hosting
more
than
600
events
to
increase
knowledge
and
further
support
for
the
300
million
people
around
the
globe
who
live
with
a
rare
disease.
According
to
the
canadian
organization
for
rare
disorders
about
1
in
12,
canadians
are
affected
by
a
rare
disorder.
A
Two-Thirds
of
them
are
children
because
of
these
diseases
are
so
uncommon.
Many
of
them
are
not
well
understood
and
can
be
under-researched
with
any
available
expertise
being
limited
and
often
fragmented
across
the
country
and
around
the
world.
This
can
severely
limit
patients
access
to
much
needed
treatment
and
care.
A
In
canada,
we
lag
behind
other
nations
in
our
approaches
to
rare
disorders.
Only
60
percent
of
new
treatments
make
it
into
the
country
and
those
that
do
get
approved
an
average
of
six
years
later
than
they
do
in
the
usa
and
europe.
It
is
clear
that
this
needs
to
change
today.
I
want
to
say
thank
you
to
all
those
working
to
raise
awareness
of
rare
diseases,
expanding
knowledge
and
improving
access
to
new
and
effective
treatments.
A
There
is
still
so
much
to
do
to
ensure
that
all
people
with
rare
conditions,
have
equitable
access
to
the
medical
care
that
they
need,
but
I
know
that
together
as
canadians,
we
can
continue
working
to
make
a
difference
today,
as
we
recognize
and
reflect
on
rare
disease
day,
we
have
the
opportunity
to
join
others
around
the
world.
As
together,
we
work
to
raise
awareness,
build
support
and
inspire
hope.