Theme 2: Our values, our rights, our future: shifting paradigms towards inclusion - ECRD2020

Evidence shows that people living with a rare disease and their families continue to face serious every-day challenges to their social inclusion. Rare diseases often ensue a high level of psychological, social and economic vulnerability and are detrimental to people’s active participation in society.

This interlinkage between rarity, vulnerability, inequalities and social exclusion means that there is space for the integration of rare disease strategies into the broader human rights’ agenda, and the global health and development efforts, with clear opportunities to contribute to the United Nations Agenda 2030: the Sustainable Development Goals (SDGs). This goal-based framework was agreed in 2015 by all UN Member States with the clear principle to “leave no one behind”. In this sense, the SDGs are interdependent, universal goals that aim to address global challenges (such as poverty, health and climate).

The synergies between the SDGs and rare diseases have been acknowledged in different events, reports and texts of the UN, and there is momentum for international commitments for the benefit of people living with a rare disease. In particular, the rare disease community has voiced the need to be included in efforts to achieve Universal Health Coverage (UHC) (as part of SDG 3 which focuses on health), as well as in efforts to ensure non-discrimination on the basis of health or disability status (part of SDG 10 on reducing inequalities, or SDG 8 on decent work).

Theme 2 looks at these ongoing advances in international advocacy and discuss the significance they have for different stakeholders of the rare disease community. A key goal of the theme will be to discuss how the rare disease community can translate those global commitments and aspirations into concrete regulatory practices and policies in the national context, which will have a real impact on the daily lives of those affected. Ongoing trends such as reduced funding for human rights, an increasingly challenging political and social space, a debilitation of the values of solidarity and equity, and a shrinking space for civil society will be part of the debate, but the overall objective of the theme will be to identify the best practices and potential new practices that prove the value of investing in human rights and inclusion.

Theme Leaders

  • Maria Montefusco, President, Rare Diseases Sweden, Sweden
  • Valentina Bottarelli, Public Affairs Director and Head of European and International Affairs, EURORDIS

 

Theme Support

  • Clare Hervas, Public Affairs Manager, European and International Affairs, EURORDIS
     

 

Latest Speakers and Sessions

Download the Theme 2 session profile for the latest speaker information.

 

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#ECRD2020 takes place uniquely online via an interactive online platform on 14 and 15 May and it is recognised globally as the largest, patient-led rare disease event. 

Find out more about the Registration Categories and Fees for ECRD 2020.

#ECRD2020 takes place uniquely online via an interactive online platform on 14 and 15 May and it is recognised globally as the largest, patient-led rare disease event. 

 

Registration Deadline

  • Payments via Bank Transfer: 1 May 2020 (23:59 CEST)
  • Payments via Credit Card, Debit Card of American Express: 10 May 2020 (23:59 CEST)

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