D
r. Millan Patel's oce
at the Children's &
Women's Health
Centre of B.C. is a
cozy clutter of les, bookcases,
textbooks and folk art from
Africa and Malaysia. Dim, win-
tery sunshine lters through a
wood-framed window, illuminat-
ing the most striking object in the
room: a rectangular whiteboard
stretching almost to the ceiling
and covered in skeins of red,
blue and green letters, numbers,
arrows and lines as cryptic as an
Enigma code. These scribbles,
Patel explains, represent the
complex and myriad pathways
underpinning a rare disease
called Adams-Oliver syndrome.
One of only 120 medical
geneticists in Canada, Patel is a
clinician scientist,
UBC professor
and research director of the Rare
Disease Foundation, an organiza-
tion he co-founded in 2008. The
purpose of the Vancouver-based
foundation is to fund research
into some of the most obscure,
inexplicable and often deadly
conditions thrown up by the
human gene pool. Adams-Oliver
is mystifying, causing numer-
ous birth defects including loss
of skin on the top of the head,
limb defects, mottled skin and,
sometimes, death in infancy.
Today, one quarter of the world's
reported 400 cases participate in
Patel's ongoing research study.
albert law aPrIl 2016 BCBusiness 19
T HE MON T HLY IN FOR MER
TMı
"Rats are almost like a sponge —
basically they absorb these
pathogens from their environment,
propagate them and potentially
spread them to humans...When
everything else is gone, I predict
there will be rats"
–p.23
A P R I L 2 0 1 6
Thinking Small
P h i l a n t h r o p y
rare diseases affect three million Canadians but get just a sliver of
the country's research dollars. a UbC geneticist hopes to change
that with an innovative fundraising model by Roberta Staley
INSIDE
How to go public ... Celebrity log-home builders ... A new berth for a travel company + more
RaRe ReseaRch
Dr. Millan Patel working at his
lab at the Children's & Women's
Health Centre of B.C.
while Patel's
model is "very
innovative,"
Dr. Diane Finegood,
CeO, Michael
Smith Foundation
for Health research,
says it is not appli-
cable to conditions
like heart disease
and cancer, which
cost billions of
health-care dollars
every year
