March 1-2, 2022 • Live on your screen

Different infrastructures and organisational arrangements are required in each country to address the healthcare needs of its rare disease population in an effective way. Whether a single rare disease affects thousands or only a handful of individuals, they all share similar challenges to get a timely diagnosis, face the same barriers to access highly specialized care and treatment options, and need to deal with a substantial psychosocial burden.

The health of people living with a rare disease should not be left to luck or chance especially amidst the COVID-19 pandemic. Planning ahead requires all stakeholders to acknowledge their individual responsibility to build a successful pathway from diagnosis to access and at the same time, commit to working together in a much more agile and coordinated way than what we have seen so far. If we fail to do so, we will have failed the 30 million people living with a rare disease in Europe.

The 2nd International Conference on Rare Diseases themed: “The Balancing Act between Equity and Sustainability” recognises the need to promote and protect the human rights of all persons, including the estimated 300 million persons living with a rare disease worldwide, many of whom are children, by ensuring equal opportunities to achieve their optimal potential development and to fully, equally and meaningfully participate in society.


About the Conference

The conference aims to underscore the need to address the root causes of inequality and discrimination faced by persons living with a rare disease and their families. In this regard, it recognizes that there is a need for policies and programmes aimed at eliminating the root causes of discrimination and stigma in healthcare settings to ensure universal and equitable access to quality health services without financial hardship for all people with RD. In addition, the conference’s scope is to promote the need to foster innovation and the positive contribution that innovation can make in promoting social cohesion, reducing inequalities and expanding opportunities for all, including persons living with a rare disease, along with recognizing the need to support, streamline and increase attention on research in rare diseases.

As the EU shapes its future regulations, strategies and access policies, this conference will serve as an opportunity to press the ‘pause button’ and take the time to call upon all EU Member States to strengthen health systems, notably in terms of primary health care, in order to provide universal access to a wide range of health-care services that are safe, of quality, accessible, available and affordable, timely, and clinically and financially integrated.

This in turn will help to empower persons living with a rare disease in addressing their physical and mental health needs to realize their human rights, including their right to the highest attainable standard of physical and mental health, to enhance health equity and equality, end discrimination and stigma, eliminate gaps in coverage and create a more inclusive society.

By co-creating policy options today that can lead to a better patient journey in the future and towards engaging all stakeholders to take action, the 2nd International Conference on Rare Diseases aspires to bring together all stakeholders in the rare disease community – patient representatives, policymakers, clinicians, researchers, industry representatives, payers and regulators to exchange invaluable knowledge with the aim of enhancing dialogue and promoting a common action plan that will help balance equity and sustainability across all EU countries so as to unite them on the front of combatting rare diseases.


Main Streams will focus on


1 | Building a Sustainable Healthcare System based on equity, equality and patient rights

2 | European vs National RD Action Plans

3 | Advancing Policy Discussion on Prevention and Newborn Screening as Pillars of Public Health

4 | Data Wealth: EU and National RD Registries

5 | Thinking out of the box: Alternative Access and Funding Models for Rare Diseases

  • Transforming Access Models for RDs 
  • Access via an Equity-based pricing 
  • Access through EU Fund for RDs  
  • New Funding Models For RD Drug Development

6 | Rare Disease as a National Priority : Design and implement National Policies, Strategies and Programmes with the aim of contributing to the well-being and fulfilling the rights of all people living with a rare disease in GRE

Advisory Committee

Will be announced soon


Will be announced soon

Who should Attend?

Healthcare Stakeholders • Government representatives & officials • Pharmaceutical industry executives (Market Access, Government Affairs, Health Economics) • Public & Private Health services providers • Health economists • Health Policy Experts • Healthcare Professionals • Nurses • Academics • Researchers • Journalists

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Chrysoula Kordouli, Τ: +30 210 6617777 (ext. 204), +30 6946236795, E: [email protected]

Info & Content
Natalia Toubanaki, T: +30 210 6617 777 (ext. 289), +306947936708, E: [email protected]


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