Maryze Schoneveld van der Linde, MA. lives in the Netherlands. She studied Cultural Anthropology and graduated at the University of Leiden, The Netherlands.

She was born with a hereditary neuromuscular disorder called Pompe’s disease. The diagnosis was made at the age of 8 years. Early in life she became involved in patient related activities to improve care and life of those with severe diseases. First related to her own disease and later extending it to rare diseases in general.

She has visited many countries in Europe, some in Asia and the USA to participate and speak on conferences and workshops. Some examples are: European Platform for Patient organisations, Science and Industry, The European Forum for Good Clinical Practice, European Health Forum Gastein, EuropaBio, European Society for Human Genetics, Rare Disease Multi-Stakeholder Forum Asia.

She has been an active board member of the Dutch Association for Respiratory Support (VSCA, 1997 – 2006) and an active board member of the International Pompe Association (IPA, 1999 – 2006).

 In 2007 she started a consultancy in health and care called Patient Centered Solutions (www.pacesworld.com). With her consultancy, she provides clients with experienced based expertise, knowledge and practical insights from a patient’s perspective. She focuses especially on rare diseases, medical development and patient involvement, patient advocacy, patient empowerment, building networks, raising awareness on diseases etc. Her clients involve: Ultragenyx Pharmaceuticals, Audentes Therapeutics, Shire, Alexion Pharmaceuticals, Sanofi Genzyme etc.

From February 2009 till 2011 she worked as a project manager for the European Neuromuscular Centre (www.enmc.org) for the EU project called TREAT-NMD (www.treat-nmd.eu). This EU project started to advance diagnosis, care and treatment for people with neuromuscular diseases around the world. In this project Maryze was responsible for the active involvement of patient organisations in Europe in issues related to care, (orphan) drug development, clinical trial design, patient registries, creating networks, ethics etc.

 From 2011 - 2012 she worked for the Dutch Genetic Alliance (www.vsop.nl) where she was employed to involve patient organisations and patients in the EU project ‘Global Research in Paediatrics (GRIP)’ to provide children with safe and effective medicines.

 

Volunteer activities

In June 2010 – 2012 Maryze addressed the increasing problems people with ventilation experience

when travelling by plane and to find a permanent solution for it at EU level. In response the EU

Commission wrote, with full support of the EU parliament, a new guideline on the Regulation (EC) No.

1107/2006 for airlines.

In 2012 – 2015 Maryze has been involved in a working group to improve the care and living conditions for people with 24 hours ventilation in the Netherlands.

 

Awards           

In May 2011, Maryze received the Angel Award for Rare Diseases 2011.

This Award is granted in the Netherlands to someone for extraordinarily work, commitment and dedication that had a significant impact for rare diseases..

In September 2010 Maryze received a Leadership Award/Certificate from the UILDM (Italian Neuromuscular Disease Association) for commitment in connecting and empowering people with a neuromuscular disease.

 

Maryze speaks fluently English, German, Dutch and basic Turkish.