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RE(ACT) Community: a platform for the #RAREvolution

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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.

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RE(ACT) Community: a platform for the #RAREvolution

  1. 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. 2. Adapted from:
  3. 3. JUNE 2016/203 Facts and figures NCDs Chronic Disabling Progressive Degenerative Life-threatening 20001
  4. 4. JUNE 2016/204 Facts and figures 80% OF RARE DISEASES ARE OF GENETIC ORIGINS
  5. 5. JUNE 2016/205 Facts and figures 8·000 RARE DISEASES 30·000 DISEASES WORLDWIDE
  6. 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. 7. BLACKSWAN Foundation amplifies collective action against rare and orphan diseases.
  8. 8. JUNE 2016/208 International Legal Framework The rare disease patient is the orphan of the health systems.
  9. 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. 10. JUNE 2016/2010 Rare diseases population has the same size of significant minority populations. Rights to Health Care for RD Patients
  11. 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. 12. RARE DISEASES IMPACT MORE PEOPLE THAN AIDS AND CANCER COMBINED Global Genes, globalgenes.org
  13. 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
  14. 14. JUNE 2016/2015 RE(ACT) Initiative A human and digital platform to scale up scientific cooperation on rare and orphan diseases.
  15. 15. 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
  16. 16. 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
  17. 17. 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
  18. 18. JUNE 2016/2019 RE(ACT) Community
  19. 19. BLACKSWAN Foundation has empowered a community that deserves to be heard.
  20. 20. 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

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