ICORD 2013 St Petersburg
The 8th ICORD International Conference on Rare Diseases and Orphan Drugs was held 1-2 November 2013 in St Petersburg, Russia.
Premeetings took place 31st October.
Full report from the 8th ICORD conference in St Petersburg in English
ICORD 2013 Conference Report English (PDF)
Full report from the 8th ICORD conference in St Petersburg in Russian
Отчет ICORD 2013 Russian (PDF)
The General assembly was held at Holiday Inn Moskovskye Vorota, St Petersburg, 1 November, 2013.
Local conference website hosted by the Russian Patient Alliance ‘Genetics’
Themes for ICORD 2013 abstracts were:
- Harmonizing Regulatory Processes
- Linking Global Efforts for Rare Diseases Research
- Registries for Rare Diseases
- Clinical Trials of Rare Diseases and Orphan Drugs
- Genetic Testing and Screening for Rare Diseases
- Cross-Border Health and Social Care for Rare Diseases Patients and Their Families
- Health policy and National Plans for Rare Diseases
- Health Technology Assessment of Rare Diseases and Orphan Drugs
- Health Economics of Rare Diseases
- Patient Empowerment and Priorities in Rare Diseases Field
- Raising Awareness and Improving Information and Education for Rare Diseases
- Clinical Guidelines and Best Practice
ICORD arranges annually a Conference where representatives of Government, Academia, third sector organizations, patients, industry worldwide can meet. For patients, researchers, seekers of new projects and products and advocates for those affected by rare diseases, this is an excellent opportunity to realize partnerships and collaborative work.
International Program Committee
formed by Strategy & Planning Committee and ICORD Board Members
Chair: Dr Virginia A. Llera (ICORD president, GEISER Foundation Latin America president, MD, Argentina)
Strategy & Planning Committee: Dr Domenica Taruscio (ICORD Past-President, Director National Centre for Rare Diseases Istituto Superiore di Sanità, Italy), Mr John Forman (ICORD President Elected, President NZORD, New Zealand), Dr Manuel Posada (ICORD Secretary, Director Institute of Research Carlos III on rare diseases IIER, Spain), Dr Marlene Haffner (ICORD Treasurer, MD, MPH Haffner Associates, LLC Orphan Solutions, ex FDA orphan drugs director, USA), Dr Rumen Stefanov (ICORD Board Member, HEAD, DEPARTMENT OF SOCIAL MEDICINE AND PUBLIC HEALTH, MEDICAL UNIVERSITY OF PLOVDIV, Bulgaria), Dr Désirée Gavhed (ICORD Secretariat and member, PhD, Karolinska Institute, Sweden)
ICORD Board members Dr Stephen Groft (ICORD Board Member and ex president, Director Office of Rare Diseases, NIH, USA), Prof Jan-Inge Henter (ICORD Board Member and Founder, MD, PhD; Director of Research and Education, Karolinska University Hospital, Sweden), Dr Simon Day (ICORD Board Member, Director of Clinical Trials Consulting &Training Limited, UK), Barbara Wuebbels (ICORD Board Member, RN, MS. Associate Director of Patient Advocacy BioMarin Pharmaceutical Inc, USA), Dr Timothy Coté (ICORD Board Member, MD MPH, ex FDA Director of Orphan Drugs, Principal, Cote Orphan Consulting LLC, USA), Dr Luis Alejandro Barrera (ICORD Board Member, PhD, President of de Latin America Medical Association of Inherited Errors of Metabolism, Colombia), Dr Yukiko Nishimura (ICORD Board Member, PhD, Technological Transfer, PRIP Tokyo University, Japan)
Advisors: Dr Erik Tambuyzer (ICORD Member, PhD, Chairman of the Board at Center for Medical Innovation CMI vzw President at ABConsult bvba, Belgium) and Dr Emilio Roldàn (ICORD Member; MD, PhD, Scientific Director GADOR S.A, Argentina)
ICORD Secretariat Office, Contact: Désirée Gavhed, email@example.com
Local organization committee ICORD 2013
Chairs: Prof Rumen Stefanov at the Medical University of Plovdiv and Head of the Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) and Ms Svetlana Karimova, President of National Association ”Genetics”, Russia