NEWS: Patients at ECRD2020 - Why Register?

The European Conference on Rare Diseases & Orphan Products (ECRD) is the largest patient-led rare disease event.

Patients attending #ECRD2020 will join 1000+ other attendees from around the world (including patient advocates, healthcare professionals, healthcare industry, academics, regulators and payers) for two days of talks, discussions and sessions hearing from over 100 speakers, panellists and chairs.

Exclusive benefits for patients include:


  • What does the future look like for people living with a rare disease? Join us and co-create the policies and services of the future. What is important for you? Help us identify measureable and improved health outcomes for people living with a rare disease.
  • How do people living with a rare disease benefit from developments in science and technology? Exchange views on the evolutions that are changing the rare disease landscape. What are the ethical, legal and social implications in areas such as data sharing, digital innovations, scientific breakthroughs, etc.?
  • How do I get better access to healthcare? Explore with us the challenges we meet in accessing healthcare. How can you play a role in transforming care provision in the future?
  • What does the future of diagnosis look like? Learn about hopes, promises and challenges of future diagnostics
  • What is going on to improve the development of rare disease therapies? Discover recent innovations in clinical research and regulatory solutions. What are the roadblocks, challenges and opportunities in developing therapies that match the needs of people living with a rare disease?
  • Holistic care – when do we finally get it? Learn more about growing efforts to advocate for organised and integrated social support and patient centred care at the national level
  • Quicker access to the latest therapies – even for people living with a rare disease! Debate the challenges and solutions. How to ensure sustainability when developing therapies that are truly available to all people living with a rare disease.
  • What is going on at the policy level? Understand the processes behind the decisions made by regulators, policy makers and healthcare industry professionals impacting the rare disease community.
  • How can I contribute? Share your experiences! Share your inspiring and innovative strategies, services or projects. Join our open microphone plenary session or present your ideas as a poster and inspire others with your outstanding ideas.
  • Come and network with us! We offer special registration prices and fellowship programmes for Patient advocates. Attend the ECRD alongside 850+ other participants and build your capacity as rare disease advocate.
  • Stand out from the crowd! Make your voice heard as a thought leader in the rare disease community. Meet other advocates and stakeholders directly related to your work.

A unique opportunity for Patients

ECRD’s 2020 theme “The journey of living with a rare disease in 2030” recognises that the next decade holds great potential for improvement, we all have a role to play in preparing for it. Tremendous progress has been made by the rare disease community, but vigilance and constant effort is necessary if we wish to hold on to important gains.

The health of 30 million people living with a rare disease in Europe should not be left to luck or chance. As the EU plans its future expenditure, ECRD 2020 serves as an opportunity to press the “pause button” and consider what policies we need to put in place today to prepare for a better patient journey in 2030 and beyond.

The dialogue, learning and conversations that take place during the Conference form part of the groundwork that will shape current and future rare disease policies and allow for important and innovative discussions on a national and an international level to take place.


about the latest advances, challenges, facts, figures and trends in the field of rare diseases with over 100 expert speakers.


of rare diseases alongside patient advocates, policy-makers, healthcare industry representatives, clinicians, payers, regulators and Member State representatives


to all stakeholders of the rare disease community.

Register now

Find out more about the Registration Categories and Fees for ECRD 2020 or download the Patients Attendance Flyer.

Organised by:

Co-organised by:


With the support of

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EU funding logo