The using of digital platforms can have a significant impact on the way rare diseases are diagnosed, studied, and treated, helping people with rare diseases connect to others worldwide. The RE(ACT) Community is human network born to share information and boost research about rare and orphan diseases. It has put at the heart of the #RAREvolution program the use of digital communication to empower the community of researchers working on rare diseases and to support them in connecting, learning and funding their projects as well as increasing awareness and advocacy for rare disease research.

1. SWISS FOUNDATION FOR RESEARCH ON ORPHAN DISEASES
SCHWEIZERISCHE STIFTUNG FÜR DIE FORSCHUNG SELTENER KRANKHEITEN
FONDATION SUISSE POUR LA RECHERCHE SUR LES MALADIES ORPHELINES
FONDAZIONE SVIZZERA PER LA RICERCA SULLE MALATTIE ORFANE
Dr. Olivier Menzel, PhD, MBA – President and Founder
Chiara Ciriminna Swan – Project Coordinator & External Relations JUNE 2016

2. Adapted from:

3. JUNE 2016/203
Facts and figures
NCDs
Chronic
Disabling
Progressive
Degenerative
Life-threatening
20001

4. JUNE 2016/204
Facts and figures
80%
OF RARE DISEASES
ARE OF GENETIC
ORIGINS

5. JUNE 2016/205
Facts and figures
8·000
RARE
DISEASES
30·000
DISEASES
WORLDWIDE

6. 6
of global population
is affected by Rare Disease
8 %
are children
75 % 3
of children do not survive
the 5th birthday
0 %
of children die
in 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

7. BLACKSWAN Foundation
amplifies collective
action against
rare and orphan
diseases.

8. JUNE 2016/208
International Legal Framework
The rare disease
patient is the orphan
of the health systems.

9. JUNE 2016/209
International Legal Framework
The rare disease
patient is the orphan
of the health systems.
United Nations Universal Declaration of Human Rights (Art. 25.1)
International Covenant on Economic, Social and Cultural Rights (Art. 12.1)
United Nations Convention on the Rights of the Child
(right to the highest attainable standard of health care)

10. JUNE 2016/2010
Rare diseases population
has the same size of
significant minority
populations.
Rights to Health Care for RD Patients

11. JUNE 2016/2011
Rights to Health Care for RD Patients
Ethical principle of justice,
non-discrimination and equity of
access to health care, all require
that specific global policies are
put in place
Rare diseases population
has the same size of
significant minority
populations.

12. RARE DISEASES
IMPACT MORE PEOPLE
THAN AIDS AND
CANCER COMBINED
Global Genes, globalgenes.org

13. JUNE 2016/3213
#RAREvolution
International Program For Rare And Orphan Diseases
Promoting a global and comprehensive strategy to ensure rare diseases are recognised
as an international public health and research priority
13
#RAREvolution
Stand up for scientific research

15. JUNE 2016/2015
RE(ACT) Initiative
A human and digital
platform to scale up
scientific cooperation
on rare and orphan
diseases.

16. JUNE 2016/2016
A human and digital
platform to scale up
scientific cooperation
on rare and orphan
diseases.
RE(ACT) Initiative
RE(ACT) Congress: world-leading
researchers present state
of-the-art research, discuss
results and exchange ideas

17. JUNE 2016/2017
A human and digital
platform to scale up
scientific cooperation
on rare and orphan
diseases.
RE(ACT) Initiative
RE(ACT) Community: facilitates
continuous collaboration
among RDs stakeholders

18. JUNE 2016/2018
www.react-community.org
A KNOWLEDGE SHARING AND
CROWDFUNDING PLATFORM
A DATABASE OF 6,000 RARE DISEASES
MEET
LEARN
SHARE
A VIRTUAL PLACE TO
CROWDFUNDING

19. JUNE 2016/2019
RE(ACT) Community

20. BLACKSWAN Foundation
has empowered
a community
that deserves
to be heard.

21. WEB
blackswanfoundation.ch
react-community.org
react-congress.org
SOCIAL BLACKSWAN FOUNDATION
facebook.com/REACT.community.official
twitter.com/blackswanfound
instagram.com/blackswan_foundation/
SOCIAL RE(ACT) INITIATIVE
facebook.com/REACT.community.official
twitter.com/react_community
#RAREvolution