Lifetime Achievement Award till Anders Olauson

The EURORDIS Awards & Black Pearl Evening is held every year to mark the occasion of Rare Disease Day and recognize outstanding patient advocates and organisations, volunteers, scientists, companies, media and policy makers who have contributed to reduce the impact of rare diseases on people's lives.

This year, the winners of the EURORDIS Awards 2017 were announced at Black Pearl ceremony in Brussels on February 21st by Vytenis Andriukaitis, European Commissioner for Health and Food Safety. Rare Disease Day Ambassador, Sean Hepburn Ferrer, the eldest son of the late Audrey Hepburn, who passed away from a rare cancer, was also present in the ceremony.

The 2017 Awards winners were:

• Policy Maker Award - Frédérique Ries, Member of the European Parliament, Belgium
• Volunteer Award – Elizabeth Vroom, Duchenne Parent Project, the Netherlands
• Media Award - Aldo Soligno, Photographer, Rare Lives Project, Italy
• Company Award - GSK (GlaxoSmithKline) – Rare Diseases
• Scientific Award - Dr Lucia Monaco, Chief Scientific Officer, Fondazione Telethon, Italy
• Patient Organisation Award - The Dravet Syndrome European Federation, Spain
• Lifetime Achievement Award - Anders Olauson, Founder of the Ågrenska Centre, Sweden

Lifetime Achievement Award - Anders Olauson, Founder of the Ågrenska Centre, Sweden

Anders Olauson has devoted the past 30 years of his life to the rare disease cause, notably rare conditions affecting the lives of children and their families. Through personal experience, Mr Olauson comments: “Having a rare disease affects all aspects of life; experiences from thousands of families worldwide tell the same story. All areas of life - healthcare, social services, schools, insurances and labour - must work together. Life is holistic, as should care and support be. Working together at the United Nations will make this possible.” Taking action to provide a platform for people living with a rare disease, Anders helped found the Ågrenska Centre in 1989, a national competence centre based in Sweden providing support for children, teenagers and adults affected by rare diseases.

Here, he continues to serve as Chairman and established the Ågrenska Academy, a virtual centre for information, research and the dissemination of knowledge of rare diseases. His work also involves contact with legislative bodies on both a national and regional level, healthcare professionals, education and labour unions and other key players in the field of rare diseases. Anders brought his enthusiasm and experience to his role as the President of EURORDIS-Rare Diseases Europe in 2000, as well as adherence as a member of the EURORDIS Board of Directors from 1999 to 2010. EURORDIS appointed Anders as its representative at the European Patients’ Forum (EPF); elected President from 2005 to 2015, Anders is now the Honorary President of EPF. EPF is active in the field of European public health and health advocacy representing the patient voice on an EU level. Since 2006, Anders has been a member of the Advisory Group for Health Research within the Directorate-General for

Research and Innovation of the European Commission. The Swedish Government also appointed Anders as a member of the Advisory Council at the National Board of Health and Welfare in 2008, serving until 2014. Anders’ continued efforts have led to his involvement with the NGO Committee for Rare Diseases, initiated by Ågrenska and EURORDIS. This committee’s objectives are to increase the visibility of rare diseases on a global level, as well as to make rare diseases a priority in public health, research, medical and social care policies.

Ander’s vision and goals for the rare disease community are reflective of his long-term dedication to rare diseases. EURORDIS is delighted to award Anders with this Lifetime Achievement Award as it serves to honour all that Anders has done for the rare disease community.