This Award is granted in the Netherlands to someone for extraordinarily work, commitment and dedication that had a significant impact for rare diseases.
The jury consisted of representatives of the Dutch Alliance for Genetic and Rare Diseases, Royal Dutch Association for the Advancement of Pharmacy (KNMP), Rare Disease Fund and the Commission of Rare Diseases.
2010 Leadership Award/Certificate received by the UILDM (Italian Neuromuscular Disease Association)
For commitment in connecting and empowering people with a neuromuscular disease.
Maryze Schoneveld van der Linde, MA., graduated at the University of Leiden, The Netherlands, in Cultural Anthropology in 1995. Since 1996 she has been working with migrant and refugee women from Turkey and the Middle East Region in empowerment related issues and activities.
She was born with a rare neuromuscular disorder. The diagnosis was made at the age of 8 years. Having a progressive neuromuscular disorder, she has a lot of experience in issues related to disability and disease. Besides having to deal with all kinds of these issues in her own personal life she provided patient organisations, companies, foundations and medical staff with information that enabled them to develop a policy that addresses the need of people with diseases and disabilities. She also teaches young students on issues that deal with scientific development, ethical and social issues.
While she was board member of the International Pompe Association (IPA 1999 – 2006) and the Dutch Association for respiratory care and support (VSCA 1997 – 2006) she has worked together, on national and international level, with physicians, specialized nurses, patients, companies and governmental institutions. She is still involved with the IPA as an advisory board member on request. Being a cultural anthropologist she has the capability to work in different cultural environments.