#RAREVOLUTION: THE USE OF DIGITAL COMMUNICATION TO … … · Rare diseases must be part of the...

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


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


8 % are children


0 %


35 %

475 MIO/7'052 MIO

RARE Diseases

228 MIO/7'052 MIO

AIDS + Malaria




8 % are children


0 %


35 %

475 MIO/7'052 MIO

RARE Diseases

228 MIO/7'052 MIO

AIDS + Malaria



#RAREvolution: Awareness


#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


Petition: “Help us to increase support for rare diseases research”

#RAREvolution: Advocacy


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


7-10 March 2018 Bologna, Italy

www.react-congress.org


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



SUPPORT


GOAL

MEET

LEARN

SHARE


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


research on orphan

connecting an international network in order to support the

rare and orphan diseasesscientific research

MISSION


Research.

WE ARE


ABOUT

crowdfunding




and concrete actions









SUPPORT


GOAL

MEET

LEARN

SHARE





research on orphan



MISSION


Research.

WE ARE


ABOUT

crowdfunding












SUPPORT


GOAL

MEET

LEARN

SHARE





research on orphan



MISSION


Research.

WE ARE


ABOUT

crowdfunding










SUPPORT


GOAL

MEET

LEARN

SHARE





research on orphan



MISSION


Research.

WE ARE


ABOUT

crowdfunding









The

RE(A

CT) C

omm

unity

pro

mot

es

info

rmat

ion

exch

ange

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rese

arch

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Don

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RE(A

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unity

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tfor

m ru

nnin

g

RE(A

CT) M

embe

rs re

ceiv

ein

form

atio

n on

rele

vant

stud

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conf

eren

ces,

mee

tings

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ants

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oth

er re

late

d ne

ws

The

RE(A

CT) C

omm

unity

hel

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sear

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m to

star

t new

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ratio

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The

RE(A

CT) C

omm

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We

are

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volu

tiona

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eopl

e

rese

arch

on

orph

an

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ectin

g an

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k in

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supp

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rare

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MIS

SION St

and

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WE A

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PEOP

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VOLU

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RARE

ABOU

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crow

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and

rare

dis

ease

s sup

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scie

ntifi

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wle

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shar

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invo

lvin

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ffer

ent t

ypes

of

stak

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ders

in ca

mpa

igns

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d co

ncre

te a

ctio

ns

in su

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esea

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all t

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of sc

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ific r

esea

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and

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d up

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deve

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of n

ew th

erap

ies f

or p

atie

nts

with

rare

dis

ease

s

is a

dig

ital p

latf

orm




SUPPORT


GOAL

MEET

LEARN

SHARE





research on orphan



MISSION


Research.

WE ARE


ABOUT

crowdfunding










SUPPORT


GOAL

MEET

LEARN

SHARE





research on orphan



MISSION


Research.

WE ARE


ABOUT

crowdfunding









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

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ific fi

eld,

spre

adin

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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

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LEAR

N

SHAR

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Rese

arch

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an su

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rpr

ojec

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nd ra

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artin

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crow

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Don

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RE(A

CT) C

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p to

ke

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pla

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m ru

nnin

g

RE(A

CT) M

embe

rs re

ceiv

ein

form

atio

n on

rele

vant

stud

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conf

eren

ces,

mee

tings

,gr

ants

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oth

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late

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ws

The

RE(A

CT) C

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unity

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ectin

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cher

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low

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m to

star

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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

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supp

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rare

and

orp

han

dise

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scie

ntifi

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earc

h

MIS

SION St

and

upfo

r Sci

entifi

cRe

sear

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WE A

RE

PEOP

LE.

VOLU

TION

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RARE

ABOU

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crow

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ding

and

rare

dis

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s sup

port

scie

ntifi

c kno

wle

dge

shar

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invo

lvin

g di

ffer

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ypes

of

stak

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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


SUPPORT


GOAL

MEET

LEARN

SHARE





research on orphan



MISSION


Research.

WE ARE


ABOUT

crowdfunding









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




SUPPORT


GOAL

MEET

LEARN

SHARE





research on orphan



MISSION


Research.

WE ARE


ABOUT

crowdfunding









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/

#RAREVOLUTION: THE USE OF DIGITAL COMMUNICATION TO … … · Rare diseases must be part of the...

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