Game Changers in Rare Diseases- Delivering 21st Century healthcare to rare disease patients: Together we can change the future!

In the past two decades we have identified the pieces that address the needs of the rare disease community. The challenge remains to combine those pieces into a picture that drives action forward with clarity and energy into a coherent and sustainable strategic plan.

Bringing together all rare diseases, across all European nations

Following on from seven successful years, 2016 sees the 8th year of the ever-growing European Conference on Rare Diseases. This biennial conference is a unique opportunity to come together and exchange: it is the event at which to connect and share with all other members of the rare disease community.

The ECRD is the only event which, from its small beginnings, has united all rare disease stakeholders from all European nations- patients and patient representatives, healthcare professionals and researchers, industry, payers, regulators and policy makers alike- in the fight against rare diseases. The ECRD now brings together over 80 speakers and more than 800 participants, covering six themes of content over two days: from the latest research, to developments in new treatments, to innovations in healthcare, social care and support at the European, national and regional levels. New meeting formats to enhance the on-site learning experience will be showcased for the first time in Edinburgh and will include a speed networking session to connect patients, researchers and industry, an open-house “soap box” lunch session, interactive roundtables, audience polling, networking lunches / coffee breaks and dedicated poster sessions.

The focus in 2016 will be on Game Changers in Rare Diseases. We will also be holding pre-conference tutorials, which will ensure that you are equipped to learn as much as possible from the conference.

Exhibit at the ECRD and you will expose your service or company to over 800 international participants.

We look forward to seeing you there!

The Basics:

What is a Rare Disease?

A rare disease is classified in Europe as being a condition that affects less than 1 in 2,000 individuals. Because rare disease patients represent the minority, there is often a lack of public awareness. Common issues facing patients and families living with rare diseases include delayed diagnosis, access to care and medication and a feeling of isolation. This is true across different countries, cultures and all rare diseases.

What are Orphan Products?

Orphan products are medicinal products intended for the diagnosis, prevention, and treatment of rare diseases.

What is ECRD?

The European Conference on Rare Diseases & Orphan Products (ECRD) is the unique platform/forum across all rare diseases, across all European countries, bringing together all stakeholders: patients’ representatives, academics, health care professionals, industry, payers, regulators and policy makers.
ECRD covers research, development of new treatments, healthcare, social care, information, public health and support at European, national, regional and international levels.
ECRD provides the state of the art of the rare disease environment, monitoring and benchmarking initiatives.

Why attend ECRD:

• Network with all stakeholders in the rare disease community
• Learn about the current landscape of policy development on orphan products and rare disease therapies
• Contribute to addressing the challenges of healthcare pathways
• Understand the opportunities in rare disease collaborative clinical research
• Hear about challenges + experiences in disease specific registries
• Find out what you can expect from European Reference Networks
• Learn about discovery process of a medicinal product from the point of view of industry and regulators
• Discover the clinical framework specific to rare diseases