Post on 18-Jul-2020
SWISS FOUNDATION FOR RESEARCH ON ORPHAN DISEASESSCHWEIZERISCHE STIFTUNG FÜR DIE FORSCHUNG SELTENER KRANKHEITENFONDATION SUISSE POUR LA RECHERCHE SUR LES MALADIES ORPHELINESFONDAZIONE SVIZZERA PER LA RICERCA SULLE MALATTIE ORFANE
Chiara Ciriminna – Project Coordinator
RE(ACT) CONGRESS 2018
#RAREVOLUTION: THE USE OF DIGITAL COMMUNICATION TO SUPPORT RARE DISEASE RESEARCH
RE(ACT) Congress 2018
#RAREvolution
2
International program for rare and orphan diseases Promoting the recognition of rare diseases as an international public
health and research priority
#RAREvolution Stand up for scientific research
RE(ACT) Congress 2018
Vision
4
of global populationis affected by Rare Disease
8 % are children
75 % 3of children do not survivethe 5th birthday
0 %
of children diein first year of life
35 %
475 MIO/7'052 MIO
RARE Diseases
228 MIO/7'052 MIO
AIDS + Malaria
RARE DISEASE DEMOGRAPHY
RARE DISEASES GLOBAL IMPACT
#RAREvolution: Awareness
4
of global populationis affected by Rare Disease
8 % are children
75 % 3of children do not survivethe 5th birthday
0 %
of children diein first year of life
35 %
475 MIO/7'052 MIO
RARE Diseases
228 MIO/7'052 MIO
AIDS + Malaria
RARE DISEASE DEMOGRAPHY
RARE DISEASES GLOBAL IMPACT
of global populationis affected by Rare Disease
8 % are children
75 % 3of children do not survivethe 5th birthday
0 %
of children diein first year of life
35 %
475 MIO/7'052 MIO
RARE Diseases
228 MIO/7'052 MIO
AIDS + Malaria
RARE DISEASE DEMOGRAPHY
RARE DISEASES GLOBAL IMPACT
#RAREvolution: Awareness
RE(ACT) Congress 2018
#RAREvolution: Advocacy
Advocacy & Awareness
Human rights based approach to assure non-discrimination, equity and justice
Rare diseases must be part of the 2030 Agenda for Sustainable Development
to meet the goals and “Leave no one behind”
Work on the commitment of the new WHO Director General Tedros Ghebreyesus
during the policy event
RE(ACT) Congress 2018
Petition: “Help us to increase support for rare diseases research”
#RAREvolution: Advocacy
RE(ACT) Congress 2018
Center for Therapeutics Discovery
Creation of a discovery and clinical research incubator dedicated
to translational science on rare diseases. The center will combine
academic expertise and technologies with industry know-how in
drug discovery.
SCTD: Reasons to succeedAn Academia/Pharma incubator in a unique scientific landscape
Expanded disease knowledge that “Personalized Medicine” initiative will create (Biobanks, Patient Data interoperability, Bioimaging, NGS)
Access to cutting-edge data, knowledge and technologies for disease & treatment heterogeneity investigation
Partnership Academia/Pharma
Fertile scientific environment with world leading scientific & hospital excellences
RE(ACT) Congress 2018
7-10 March 2018 Bologna, Italy
www.react-congress.org
RE(ACT) Congress 2018
www.react-community.org
The RE(ACT) Community promotes information exchange among researchers and encourages patients to share their health experiences
SUPPORT
to act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
GOAL
MEET
LEARN
SHARE
Researchers can submit theirprojects and raise funds starting a crowdfunding campaign. Donations to the RE(ACT) Community help to keep the whole platform running
RE(ACT) Members receiveinformation on relevant studies, conferences, meetings,grants, and other related news
The RE(ACT) Community helps connecting researchers and allows them to start new collaborations
The RE(ACT) CommunityWe are the RAREvolutionary People
research on orphan
connecting an international network in order to support
rare and orphan diseasescientific research
MISSION
Stand upfor Scientific
Research.
WE ARE
PEOPLE.VOLUTIONARYRARE
ABOUT
crowdfunding
and rare diseases support
scientific knowledge sharing
involving different types of stakeholders in campaigns
and concrete actions in support of research
engaging all those who want to support the advancement
of scientific research and speed up the development
of new therapies for patients with rare diseases
is a digital platform
GOAL: act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
RE(ACT) Congress 2018
The RE(ACT) Community promotes information exchange among researchers and encourages patients to share their health experiences
SUPPORT
to act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
GOAL
MEET
LEARN
SHARE
Researchers can submit theirprojects and raise funds starting a crowdfunding campaign. Donations to the RE(ACT) Community help to keep the whole platform running
The RE(ACT) Community encourages both researchers to publish scientific information/new findings and patients to share their personal health experiences. RE(ACT) Members can receive information on relevant studies, conferences, meetings, grants, and other related news
The RE(ACT) Community helps connecting all the researchers and allows them to start new collaborations
The RE(ACT) CommunityWe are the RAREvolutionary People
research on orphan
connecting an international network in order to support the
rare and orphan diseasesscientific research
MISSION
Stand upfor Scientific
Research.
WE ARE
PEOPLE.VOLUTIONARYRARE
ABOUT
crowdfunding
and rare diseases support
scientific knowledge sharing
involving different types of stakeholders in campaigns
and concrete actions
engaging all those who want to support the advancement
of scientific research and speed up the development
of new therapies for patients with rare diseases
is a digital platform
www.react-community.org
RE(ACT) Congress 2018
www.react-community.org
The RE(ACT) Community promotes information exchange among researchers and encourages patients to share their health experiences
SUPPORT
to act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
GOAL
MEET
LEARN
SHARE
Researchers can submit theirprojects and raise funds starting a crowdfunding campaign. Donations to the RE(ACT) Community help to keep the whole platform running
RE(ACT) Members receiveinformation on relevant studies, conferences, meetings,grants, and other related news
The RE(ACT) Community helps connecting researchers and allows them to start new collaborations
The RE(ACT) CommunityWe are the RAREvolutionary People
research on orphan
connecting an international network in order to support
rare and orphan diseasescientific research
MISSION
Stand upfor Scientific
Research.
WE ARE
PEOPLE.VOLUTIONARYRARE
ABOUT
crowdfunding
and rare diseases support
scientific knowledge sharing
involving different types of stakeholders in campaigns
and concrete actions in support of research
engaging all those who want to support the advancement
of scientific research and speed up the development
of new therapies for patients with rare diseases
is a digital platform
RE(ACT) Congress 2018
www.react-community.org
The RE(ACT) Community promotes information exchange among researchers and encourages patients to share their health experiences
SUPPORT
to act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
GOAL
MEET
LEARN
SHARE
Researchers can submit theirprojects and raise funds starting a crowdfunding campaign. Donations to the RE(ACT) Community help to keep the whole platform running
RE(ACT) Members receiveinformation on relevant studies, conferences, meetings,grants, and other related news
The RE(ACT) Community helps connecting researchers and allows them to start new collaborations
The RE(ACT) CommunityWe are the RAREvolutionary People
research on orphan
connecting an international network in order to support
rare and orphan diseasescientific research
MISSION
Stand upfor Scientific
Research.
WE ARE
PEOPLE.VOLUTIONARYRARE
ABOUT
crowdfunding
and rare diseases support
scientific knowledge sharing
involving different types of stakeholders in campaigns
and concrete actions in support of research
engaging all those who want to support the advancement
of scientific research and speed up the development
of new therapies for patients with rare diseases
is a digital platform
The RE(ACT) Community promotes information exchange among researchers and encourages patients to share their health experiences
SUPPORT
to act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
GOAL
MEET
LEARN
SHARE
Researchers can submit theirprojects and raise funds starting a crowdfunding campaign. Donations to the RE(ACT) Community help to keep the whole platform running
RE(ACT) Members receiveinformation on relevant studies, conferences, meetings,grants, and other related news
The RE(ACT) Community helps connecting researchers and allows them to start new collaborations
The RE(ACT) CommunityWe are the RAREvolutionary People
research on orphan
connecting an international network in order to support
rare and orphan diseasescientific research
MISSION
Stand upfor Scientific
Research.
WE ARE
PEOPLE.VOLUTIONARYRARE
ABOUT
crowdfunding
and rare diseases support
scientific knowledge sharing
involving different types of stakeholders in campaigns
and concrete actions in support of research
engaging all those who want to support the advancement
of scientific research and speed up the development
of new therapies for patients with rare diseases
is a digital platform
The
RE(A
CT) C
omm
unity
pro
mot
es
info
rmat
ion
exch
ange
am
ong
rese
arch
ers
and
enco
urag
es p
atie
nts t
o sh
are
thei
r he
alth
expe
rienc
es
SUPP
ORT
to a
ct a
s a g
ame
chan
ger i
n th
e sc
ient
ific fi
eld,
spre
adin
g th
e vo
ice
abou
t the
urg
ency
of i
nves
ting
in ra
re a
nd o
rpha
n di
seas
e re
sear
ch
GOAL
MEE
T
LEAR
N
SHAR
E
Rese
arch
ers c
an su
bmit
thei
rpr
ojec
ts a
nd ra
ise
fund
s st
artin
g a
crow
dfun
ding
ca
mpa
ign.
Don
atio
ns to
the
RE(A
CT) C
omm
unity
hel
p to
ke
ep th
e w
hole
pla
tfor
m ru
nnin
g
RE(A
CT) M
embe
rs re
ceiv
ein
form
atio
n on
rele
vant
stud
ies,
conf
eren
ces,
mee
tings
,gr
ants
, and
oth
er re
late
d ne
ws
The
RE(A
CT) C
omm
unity
hel
ps
conn
ectin
g re
sear
cher
s an
d al
low
s the
m to
star
t new
co
llabo
ratio
ns
The
RE(A
CT) C
omm
unity
We
are
the
RARE
volu
tiona
ry P
eopl
e
rese
arch
on
orph
an
conn
ectin
g an
inte
rnat
iona
l ne
twor
k in
ord
er to
supp
ort
rare
and
orp
han
dise
ase
scie
ntifi
c res
earc
h
MIS
SION St
and
upfo
r Sci
entifi
cRe
sear
ch.
WE A
RE
PEOP
LE.
VOLU
TION
ARY
RARE
ABOU
T
crow
dfun
ding
and
rare
dis
ease
s sup
port
scie
ntifi
c kno
wle
dge
shar
ing
invo
lvin
g di
ffer
ent t
ypes
of
stak
ehol
ders
in ca
mpa
igns
an
d co
ncre
te a
ctio
ns
in su
ppor
t of r
esea
rch
enga
ging
all t
hose
who
wan
t to
supp
ort t
he a
dvan
cem
ent
of sc
ient
ific r
esea
rch
and
spee
d up
the
deve
lopm
ent
of n
ew th
erap
ies f
or p
atie
nts
with
rare
dis
ease
s
is a
dig
ital p
latf
orm
RE(ACT) Congress 2018
www.react-community.org
The RE(ACT) Community promotes information exchange among researchers and encourages patients to share their health experiences
SUPPORT
to act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
GOAL
MEET
LEARN
SHARE
Researchers can submit theirprojects and raise funds starting a crowdfunding campaign. Donations to the RE(ACT) Community help to keep the whole platform running
RE(ACT) Members receiveinformation on relevant studies, conferences, meetings,grants, and other related news
The RE(ACT) Community helps connecting researchers and allows them to start new collaborations
The RE(ACT) CommunityWe are the RAREvolutionary People
research on orphan
connecting an international network in order to support
rare and orphan diseasescientific research
MISSION
Stand upfor Scientific
Research.
WE ARE
PEOPLE.VOLUTIONARYRARE
ABOUT
crowdfunding
and rare diseases support
scientific knowledge sharing
involving different types of stakeholders in campaigns
and concrete actions in support of research
engaging all those who want to support the advancement
of scientific research and speed up the development
of new therapies for patients with rare diseases
is a digital platform
The RE(ACT) Community promotes information exchange among researchers and encourages patients to share their health experiences
SUPPORT
to act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
GOAL
MEET
LEARN
SHARE
Researchers can submit theirprojects and raise funds starting a crowdfunding campaign. Donations to the RE(ACT) Community help to keep the whole platform running
RE(ACT) Members receiveinformation on relevant studies, conferences, meetings,grants, and other related news
The RE(ACT) Community helps connecting researchers and allows them to start new collaborations
The RE(ACT) CommunityWe are the RAREvolutionary People
research on orphan
connecting an international network in order to support
rare and orphan diseasescientific research
MISSION
Stand upfor Scientific
Research.
WE ARE
PEOPLE.VOLUTIONARYRARE
ABOUT
crowdfunding
and rare diseases support
scientific knowledge sharing
involving different types of stakeholders in campaigns
and concrete actions in support of research
engaging all those who want to support the advancement
of scientific research and speed up the development
of new therapies for patients with rare diseases
is a digital platform
The
RE(A
CT) C
omm
unity
pro
mot
es
info
rmat
ion
exch
ange
am
ong
rese
arch
ers
and
enco
urag
es p
atie
nts t
o sh
are
thei
r he
alth
expe
rienc
es
SUPP
ORT
to a
ct a
s a g
ame
chan
ger i
n th
e sc
ient
ific fi
eld,
spre
adin
g th
e vo
ice
abou
t the
urg
ency
of i
nves
ting
in ra
re a
nd o
rpha
n di
seas
e re
sear
ch
GOAL
MEE
T
LEAR
N
SHAR
E
Rese
arch
ers c
an su
bmit
thei
rpr
ojec
ts a
nd ra
ise
fund
s st
artin
g a
crow
dfun
ding
ca
mpa
ign.
Don
atio
ns to
the
RE(A
CT) C
omm
unity
hel
p to
ke
ep th
e w
hole
pla
tfor
m ru
nnin
g
RE(A
CT) M
embe
rs re
ceiv
ein
form
atio
n on
rele
vant
stud
ies,
conf
eren
ces,
mee
tings
,gr
ants
, and
oth
er re
late
d ne
ws
The
RE(A
CT) C
omm
unity
hel
ps
conn
ectin
g re
sear
cher
s an
d al
low
s the
m to
star
t new
co
llabo
ratio
ns
The
RE(A
CT) C
omm
unity
We
are
the
RARE
volu
tiona
ry P
eopl
e
rese
arch
on
orph
an
conn
ectin
g an
inte
rnat
iona
l ne
twor
k in
ord
er to
supp
ort
rare
and
orp
han
dise
ase
scie
ntifi
c res
earc
h
MIS
SION St
and
upfo
r Sci
entifi
cRe
sear
ch.
WE A
RE
PEOP
LE.
VOLU
TION
ARY
RARE
ABOU
T
crow
dfun
ding
and
rare
dis
ease
s sup
port
scie
ntifi
c kno
wle
dge
shar
ing
invo
lvin
g di
ffer
ent t
ypes
of
stak
ehol
ders
in ca
mpa
igns
an
d co
ncre
te a
ctio
ns
in su
ppor
t of r
esea
rch
enga
ging
all t
hose
who
wan
t to
supp
ort t
he a
dvan
cem
ent
of sc
ient
ific r
esea
rch
and
spee
d up
the
deve
lopm
ent
of n
ew th
erap
ies f
or p
atie
nts
with
rare
dis
ease
s
is a
dig
ital p
latf
orm
The RE(ACT) Community promotes information exchange among researchers and encourages patients to share their health experiences
SUPPORT
to act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
GOAL
MEET
LEARN
SHARE
Researchers can submit theirprojects and raise funds starting a crowdfunding campaign. Donations to the RE(ACT) Community help to keep the whole platform running
RE(ACT) Members receiveinformation on relevant studies, conferences, meetings,grants, and other related news
The RE(ACT) Community helps connecting researchers and allows them to start new collaborations
The RE(ACT) CommunityWe are the RAREvolutionary People
research on orphan
connecting an international network in order to support
rare and orphan diseasescientific research
MISSION
Stand upfor Scientific
Research.
WE ARE
PEOPLE.VOLUTIONARYRARE
ABOUT
crowdfunding
and rare diseases support
scientific knowledge sharing
involving different types of stakeholders in campaigns
and concrete actions in support of research
engaging all those who want to support the advancement
of scientific research and speed up the development
of new therapies for patients with rare diseases
is a digital platform
The
RE(A
CT) C
omm
unity
pro
mot
es
info
rmat
ion
exch
ange
am
ong
rese
arch
ers
and
enco
urag
es p
atie
nts t
o sh
are
thei
r he
alth
expe
rienc
es
SUPP
ORT
to a
ct a
s a g
ame
chan
ger i
n th
e sc
ient
ific fi
eld,
spre
adin
g th
e vo
ice
abou
t the
urg
ency
of i
nves
ting
in ra
re a
nd o
rpha
n di
seas
e re
sear
ch
GOAL
MEE
T
LEAR
N
SHAR
E
Rese
arch
ers c
an su
bmit
thei
rpr
ojec
ts a
nd ra
ise
fund
s st
artin
g a
crow
dfun
ding
ca
mpa
ign.
Don
atio
ns to
the
RE(A
CT) C
omm
unity
hel
p to
ke
ep th
e w
hole
pla
tfor
m ru
nnin
g
RE(A
CT) M
embe
rs re
ceiv
ein
form
atio
n on
rele
vant
stud
ies,
conf
eren
ces,
mee
tings
,gr
ants
, and
oth
er re
late
d ne
ws
The
RE(A
CT) C
omm
unity
hel
ps
conn
ectin
g re
sear
cher
s an
d al
low
s the
m to
star
t new
co
llabo
ratio
ns
The
RE(A
CT) C
omm
unity
We
are
the
RARE
volu
tiona
ry P
eopl
e
rese
arch
on
orph
an
conn
ectin
g an
inte
rnat
iona
l ne
twor
k in
ord
er to
supp
ort
rare
and
orp
han
dise
ase
scie
ntifi
c res
earc
h
MIS
SION St
and
upfo
r Sci
entifi
cRe
sear
ch.
WE A
RE
PEOP
LE.
VOLU
TION
ARY
RARE
ABOU
T
crow
dfun
ding
and
rare
dis
ease
s sup
port
scie
ntifi
c kno
wle
dge
shar
ing
invo
lvin
g di
ffer
ent t
ypes
of
stak
ehol
ders
in ca
mpa
igns
an
d co
ncre
te a
ctio
ns
in su
ppor
t of r
esea
rch
enga
ging
all t
hose
who
wan
t to
supp
ort t
he a
dvan
cem
ent
of sc
ient
ific r
esea
rch
and
spee
d up
the
deve
lopm
ent
of n
ew th
erap
ies f
or p
atie
nts
with
rare
dis
ease
s
is a
dig
ital p
latf
orm
RE(ACT) Congress 2018
www.react-community.org
The RE(ACT) Community promotes information exchange among researchers and encourages patients to share their health experiences
SUPPORT
to act as a game changer in the scientific field, spreading the voice about the urgency of investing in rare and orphan disease research
GOAL
MEET
LEARN
SHARE
Researchers can submit theirprojects and raise funds starting a crowdfunding campaign. Donations to the RE(ACT) Community help to keep the whole platform running
RE(ACT) Members receiveinformation on relevant studies, conferences, meetings,grants, and other related news
The RE(ACT) Community helps connecting researchers and allows them to start new collaborations
The RE(ACT) CommunityWe are the RAREvolutionary People
research on orphan
connecting an international network in order to support
rare and orphan diseasescientific research
MISSION
Stand upfor Scientific
Research.
WE ARE
PEOPLE.VOLUTIONARYRARE
ABOUT
crowdfunding
and rare diseases support
scientific knowledge sharing
involving different types of stakeholders in campaigns
and concrete actions in support of research
engaging all those who want to support the advancement
of scientific research and speed up the development
of new therapies for patients with rare diseases
is a digital platform
RE(ACT) Congress 2018
www.react-community.org
RE(ACT) Congress 2018
www.react-community.org
RE(ACT) Congress 2018
www.react-community.org
WEB blackswanfoundation.ch react-community.org react-congress.org
SOCIALfacebook.com/REACT.community.official twitter.com/blackswanfound linkedin.com/company/blackswan-foundation instagram.com/blackswan_foundation/