ECRD 2022: Solving the complex challenges faced by people living with a rare disease in Europe

mayo 2022

From 27 June to 1 July, join us at the 11th edition of the European Conference on Rare Diseases and Orphan Products, which mirrors current political opportunities and policy milestones and presents an opportunity to hear from European and international institutions and key opinion leaders working in the field. Get a chance to exchange invaluable knowledge with over 1500 stakeholders and drive change for a better future for the 30 million Europeans living with a rare disease! Register now for ECRD 2022.

What’s so unique about ECRD 2022?

Over 250+ innovative posters presenting latest research and projects on rare diseases
High-level policy discussions and debates
Prominent opinion leaders, policy makers, researchers and patient advocates from all across the world, including dedicated thought leader sessions to tackle some of the biggest rare disease challenges

The European Conference on Rare Diseases will spearhead change by building on the political momentum around rare diseases. Designated as an official event of the 2022 French Presidency of the Council of the European Union, ECRD 2022 demonstrates considerable support to keep rare diseases a priority on the EU scene. On the international scale, the adoption of the United Nations Resolution on Addressing the Challenges of Persons Living with a Rare Disease in December 2021 has created the enthusiasm and opportunity to align the European and UN agendas.

The time is right to consider a new strategy for rare diseases in Europe and provide an opportunity to set three ambitious goals, each aligned with a UN Sustainable Development Goal (SDG): promoting health and well-being, reducing inequalities, and fostering rare disease research and innovation.

Sneak Peek at the Programme

“We need to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within six months of coming to medical attention,” says Yann Le Cam, EURORDIS Chief Executive Officer

The Opening Plenary session on Day 1, will set the scene for this year’s conference, and the three following days will each tackle one of the above three themes.

DAY 2: Ensuring healthy lives and promoting well-being for all people living with a rare disease at all ages

How can we improve health outcomes to improve the lives of families affected by a rare disease? During this second day of the ECRD, we will hear from Elizabeth Vroom, World Duchenne Organization, Marie-Christine Ouillade, AFM-Téléthon & SMA Europe, and Giancarlo La Marca, Meyer Children’s Hospital (Italy), among many others to discuss how to diagnose rare diseases more quickly and accurately, as well as how health systems can do more for people living with a rare disease.

Sessions include:

Diagnostic testing technologies, care and treatments and
Innovative health systems arrangements

DAY 3: Reduce inequality within and among countries by focusing on equity for people living with a rare disease

Flaminia Macchia, Rare Diseases International Executive Director says “addressing the specific challenges faced by persons living with a rare disease is a necessary step toward making this vulnerable population visible and contributing to the UN Agenda 2030 and the Sustainable Development Goals”.

How can we improve the recognition, understanding and knowledge of rare diseases and their impact on the people who live with them? On Day 3, hear from Dr Ana Rath, Orphanet, Alba Ancochea, FEDER, Inmaculada Placencia from the European Commission, Anne-Sophie Lapointe from the French Ministry for Health, and many more reflecting on policy interventions to address the structural barriers and knowledge gaps.

Join us in sessions on:

Invisibility as a roadblock towards reducing inequalities
Inequalities in accessing health and social care
Inequalities in accessing and remaining in education & employment

DAY 4: Building resilient infrastructure, promoting inclusive and sustainable industry and fostering innovation for people living with a rare disease

In today’s world, science and technology offer an unprecedented opportunity to address the unmet medical needs of people living with a rare disease. How can we ensure that this potential is translated into actual health benefits for people living with a rare disease?

On Day 4 of ECRD, join Mark Hanauer, Orphanet, Maurizio Scarpa, MetabERN, Ruxandra Draghia Akli, Johnson & Johnson, Nathalie Moll, EFPIA, and Avril Daly, Retina International, for one of these four insightful sessions:

Building a seamless health data ecosystem
Making Europe attractive for therapies development
How to make the best use of European Reference Networks & improve the efficiency of the whole system
Can Europe be attractive and sustainable?

DAY 5: Strengthening EU cooperation on rare disease – the Trio Presidency

Day 5 marks the first day of the Czech Presidency of the Council of the European Union. Hear about the opportunities and commitment of the Czech Republic to keep rare diseases high on the public health priority agenda, along with keynote speakers including Hans Kluge, WHO Regional Director for Europe and three young citizens, before reflecting on the key learnings and outcomes from the conference and next steps from EURORDIS Vice-President, Avril Daly.

Why now?

The three themes of the conference are coming together to support our call for a coordinated European strategy on rare diseases. This is needed to ensure that actions are considered and coordinated in a comprehensive manner to reach meaningful goals for patients, families, and society.

“Policies on rare diseases should be sustainable and centred around measurable goals we want to achieve across Europe to leave no person living with a rare disease behind by 2030,” concluded Yann Le Cam.

For any questions regarding ECRD 2022 contact Martina Bergna, EURORDIS Events Manager: martina.bergna@eurordis.org.

Stanislav Ostapenko, Communications Manager, EURORDIS