6th European Conference on Rare Diseases and Orphan Products


29 May, 2012 -  Ireland was well represented at the recent ECRD European Conference on Rare Diseases & Orphan Products, which took place in Brussels from 23 - 25 May. GRDO was represented by Information & Development Officer, Kathy Tynan, as well as Chair Avril Daly, who was overall Co-Chair of the conference in her capacity as EURORDIS board member.

Among those also participating from Ireland were the Irish Platform for Patients Organisations, Science & Industry (IPPOSI), the National Centre for Medical Genetics (NCMG), the Children’s University Hospital, 22Q11 Ireland, Bee for Battens, Trinity College School of Nursing & Midwifery and UCD School of Medicine.

ECRD 2012 particpants from Ireland

The event was a resounding success gathering close to 700 people to further promote rare diseases in the health and research policy agendas of the EU and Member States.

Entitled, “A better future for patients: Shaping together the Agenda 2020,” it was the largest event organised to date with delegates coming from 55 countries covering most of Europe, as well as the US, Canada and even far places like Australia, Thailand and Venezuela. Close to half of the attendees were patient representatives. Health professionals, academics and policy-makers represented one third of the audience and the remaining participants represented the biotech and pharmaceutical industry.

The presence of EU Commissioner for Health, John Dalli, highlighted the commitment of the European Union to the field of rare diseases.  He opened the Conference by saying "The European Commission's objective in the years to come remains to improve the conditions for patients to obtain appropriate and timely diagnosis, information and access to innovative therapies…I am confident that most Member States will adopt National Plans on Rare Diseases in due time despite the difficult economic climate."

ECRD 2012 Brussels was structured around seven thematic pillars of strategic importance to the European rare disease community: National Plans for Rare Diseases, Centres of Expertise and European Reference Networks, Information and Public Health, Research, Access and Regulation of Orphan Drugs and Therapies, and Patient Empowerment.

Overall, there were 36 different sessions involving more than 100 speakers. The Opening and Plenary and other selected sessions were simultaneously interpreted into English, French, German, Spanish, Dutch and Russian. The programme included presentations, panel discussions, satellite workshops and tutorials, a poster session, three receptions and plenty of opportunities for participants to network in a convivial environment.

To get a flavour of proceedings, watch the opening session here, led by Avril Daly: