Terkel Andersen

  • President

Terkel Andersen


President of the Board, EURORDIS-Rare Diseases Europe

email: terkel.andersen@eurordis.org

Terkel Andersen was elected President of EURORDIS-Rare Diseases Europe in May 2003 and has been a member of the EURORDIS Board of Directors since 1997, when the organisation was founded.

A person with haemophilia himself, Terkel has broad experience in disability and health issues becoming involved in the rare disease field in 1983 when he joined a Nordic project on the mapping of problems related to rare diseases. Terkel served as president of the Danish Haemophilia Society 1985-2017. He was one of the founders of the Danish Alliance of Rare Disorders in 1986 and worked as the first Executive Director of the Centre for Rare Diseases and Disabilities of the Ministry of Social Affairs in Denmark from 1990 to 2001.  From 1992 to 2002, he served on the executive board of the World Federation of Hemophilia; and from 1993 to 1999, he was chairman of the European Haemophilia Consortium.

In his professional capacity Terkel worked with the Danish National Council for Volunteering until October 2018.

Terkel represents EURORDIS at International Conferences throughout Europe and beyond.

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