Register for the European Conference on Rare Diseases 2016

European Conference on Rare Diseases & Orphan Products

The 8th European Conference on Rare Diseases & Orphan Products (ECRD) will take place in Edinburgh from 26 – 28 May 2016. ECRD 2016 will address current and future issues facing rare disease patients so that game-changing and sustainable responses can be developed.

With over 800 participants from more than 40 countries, ECRD 2016 provides a unique platform for all members of the rare disease community across all European countries: patients, patient representatives and caregivers; academics, scientists and researchers; payers and regulators; healthcare professionals, industry, policy makers and representatives of EU Member States.

Since the first ECRD 15 years ago, the conference has allowed the rare disease community to regularly gather to monitor relevant initiatives, drive the policy framework around diagnosis, treatment and care and to empower the community to drive change where it is needed most. Outputs from ECRD support continuity and extension of health and social policies on rare diseases across the EU, and at a national and local level.

Get involved!

There are only a few days left to submit a poster abstract (deadline 31 January). You can also register before 18 March to benefit from reduced early bird rates or find out more about how to exhibit at ECRD 2016. Follow news of ECRD 2016 on social media with #ECRD2016.

New meeting formats will include a speed networking session to connect patients, researchers and industry, an open-house 'soap box' lunch session, audience polling and networking lunches. Conference participants can take advantage of live interpretation of the opening and plenary sessions from English into French, Spanish, German, Italian and Russian.

The EURORDIS Membership Meeting 2016 (EMM 2016 Edinburgh) will take place on 26 May in conjunction with ECRD 2016. EURORDIS members can select to also attend the EMM when registering for ECRD using this form.

ECRD 2016 theme – game changers

All across Europe patients are facing the same challenges of access to information, diagnosis, care, and medicines. ECRD 2016 supports cross-EU collaboration, which creates a unique opportunity to build a more comprehensive and effective approach to tackling these challenges.

In the context of focusing on a collaborative approach, the ECRD 2016 theme is 'Game changers in rare diseases'. Conference sessions will concentrate on game-changing initiatives and policies in: research, diagnosis, drug development, authorisation and access, care provision, social policy, and global society.

The context of ECRD 2016

After more than 20 years of hard work, advances in rare disease science and clinical care are coming together to form a pan-European policy framework. ECRD provides for a platform to concretely demonstrate the importance of EU actions in the field of rare diseases. Opportunities to network and cooperate at ECRD 2016 will stimulate debate and help to secure continuity of action and avoid duplication of efforts from various initiatives. This is important in situations where resources are often scarce and collaboration is therefore key.

However, the progress made in the last 20 years is putting pressure on healthcare systems, systems that need to rise up to the challenge of doing more with less, especially in times of restricted budgets. We can now do more than ever before for people living with a rare disease, but the challenge is to continue to successfully create frameworks, or maintain existing frameworks, to respond positively to new advances. For this to happen, all stakeholders need to join forces across Europe and around the world and play their role in improving the lives of rare disease patients.

We hope to see you in Edinburgh for the biggest ECRD yet!

Yann Le Cam, Chief Executive Officer, EURORDIS 

Page created: 25/01/2016
Page last updated: 28/10/2016
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases