6th European Conference on Rare Diseases and Orphan
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.
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.
More information and full programme on rare-diseases.eu
Read European Commissioner for Health and Consumer Policy, John Dalli’s speech
To see the official conference photographs - click here
Latest GRDO news11 June Consultation Day on National Rare Disease Plan, 30 April 2012 - click here
HRB hosts workshop on rare disease research in Ireland, 26 March 2012 - click here
GRDO welcomes commitment to develop clinical care programme for rare diseases, 7 March 2012 - click here
Seanad debate on rare disease, 7 March 2012 - click here
GRDO addresses Joint Oireachtas Committee, 29 February 2012 - view here
GRDO survey highlights need for National Rare Disease Office, 28 February 2012 - click here
Promotional video for Rare Disease Day 2012 launched, 13 February 2012, featuring six people with rare conditions in Ireland - click here
Newsletter 2011-2012 - click here
Newsletter 2010 - click here
Newsletter 2009 - click here
Newsletter 2008 - click here