Supporting parent organisations

Many European and international parent and patient organisations support the development of European standards. Parent and patient organisations are organisations by and for parents of preterm born and ill born babies who needed treatment in the neonatal unit. If you wish to learn more about an organisation, please click on the link in the logo. If you are a parent or patient organisation and are interested in joining the project as a supporting organisation, please contact us.


International Patient Organisation for Primary Immunodeficiencies (IPOPI)

IPOPI is the Association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency patients worldwide through global collaboration. As such IPOPI acts as the global advocate of the PID patient community in all relevant policy, legislative and regulatory matters. Primary Immunodeficiencies (PIDs) represent a large group of close to 400 chronic and rare disorders in which the immune system or parts of the immune system do not function correctly.


Czech Republic





The Republic of North Macedonia

The Netherlands

New Zealand

Northern Ireland