International Genetic Alliance (IGA)
IGA is an alliance of continental and regional alliances of parent and patient organisations with an involvement in the opportunities and implications of genetics and biotechnology regarding its potential for prevention and treatment of serious diseases.
The Foundation for Information on Animal Research (Stichting Informatie Dierproeven)
Provides information on scientific research involving animals to the Dutch public and communicates from a patient perspective. The foundation is acknowledged by the Dutch government as important intermediate between the scientific community and the public at large.
Dutch Association for Laboratory animal science (Nederlandse Vereniging voor Proefdierkunde – NVP)
An association to advance scientific understanding and knowledge of the use, care and welfare of laboratory animals and promote refinement, reduction and replacement.
A biotechnology company developing and applying advanced technologies in the life sciences
European Federation of Pharmaceutical Companies and Associations (EFPIA)
Represents the research-based pharmaceutical industry operating in Europe
University of Utrecht (the Netherlands)
One of Europe’s largest and most prominent institutes of research and education. Utrecht University offers the broadest spectrum of disciplines available in the Netherlands, innovative research and liaises with universities and research centers all over the world.
European Genetic Alliances’ Network (EGAN)
EGAN is working for a voice in research and health policy and seeks a world in which genetic diseases are understood, effectively treated, prevented and the people affected supported.
World Alliance of Neuromuscular Disorder Associations (WANDA)
WANDA seeks a world in which neuromuscular disorders are understood and eradicated and in which the people affected are well supported.
Week of the Chronically Ill (Week van de Chronisch Zieken)
Is a joint initiative of Dutch organisations of patients, care takers, medical professionals, researchers, employers and employees. The purpose is to inform the public about new developments and current state of affairs in care and society in general for people with a chronic disease.
Radboud University Nijmegen (The Netherlands) – Centre for Society and Genomics
The Centre for Society and Genomics (CSG) describes, analyses and improves the relationship between society and genomics research. By doing so, CSG improves the way in which genomics meets the expectations and needs of society.
Conference organiser of the 1st World Orphan Drug Congress in Geneva, Switzerland.
A biopharmaceutical company focused on the discovery, development and commercialization of RNA modulating therapeutics. The company targets genetic disorders with a large unmet medical need, with primary focus on neuromuscular disorders.
TheMeeting – Optimal role of patient organisations in drug development
Conference about how partnership with patient organisations can contribute to more efficient drug development in all its aspects.
One of the world’s leading research-based pharmaceutical and healthcare companies. With offices over 100 countries.
A global healthcare leader focused on patients’ needs and offers a range of essential healthcare assets. With offices over 100 countries.
International Pompe Association
A federation of Pompe disease patient’s groups world-wide. It seeks to coordinate activities and share experience and knowledge between different groups.
An intermediary organisation that stimulates the collaboration and knowledge transfer between universities and external parties.
Life – Association against child rare illness in Serbia.
Enobia Belgium SPRL
A biopharmaceutical company focused on the development of therapies to treat patients with ultra-rare and life-threatening genetic metabolic disorders.
A global biopharmaceutical company that discovers, develops and delivers life-changing therapies for patients living with severe, life-threatening and often ultra-rare diseases.
University of Amsterdam (The Netherlands)
Providing an expert contribution from the patient perspective to the University Masterclass on Professional Ethics.
University of Twente (The Netherlands)
Providing a lecture to students of Health Sciences.
A global biopharmaceutical company that provides treatments in the areas of Neurosciences, Rare Diseases, Gastrointestinal, Internal Medicine and Regenerative Medicine.
BioMarin Pharmaceutical Inc.
Develops and commercializes innovative biopharmaceuticals for serious diseases and medical conditions.
Is a biotechnology company committed to the development and commercialization of innovative new treatments for people with serious, rare diseases through the application of gene therapy technology.
Ultragenyx Pharmaceutical Inc.
Is a clinical-stage biotechnology company committed to bringing to market novel products for the treatment of rare and ultra-rare diseases, with an initial focus on serious, debilitating genetic diseases.
Is a biotechnology company at the forefront of advanced therapies to treat a range of devastating rare and orphan diseases.
Is focusing on the development and commercialization of innovative treatments of mitochondrial and neuromuscular diseases.
Valerion Therapeutics Inc.
Is a biotechnology company focused on developing targeted therapies for orphan genetic diseases.
Huron is a global professional services firm committed to achieving sustainable results in partnership with clients. They bring a depth of expertise in strategy, operations, advisory services, technology and analytics to drive lasting and measurable results in the healthcare, higher education, life sciences and commercial sectors. Through focus, passion and collaboration, Huron provides guidance to support organizations as they contend with the change transforming their industries and businesses.
Alnylam is leading the translation of RNA interference (RNAi) into a whole new class of innovative medicines with the potential to transform the lives of patients who have limited or inadequate treatment options.
Gilead is dedicated to developing innovative medicines for life-threatening illnesses.