December 15, 2023

IPOPI holds a PID Forum on Mental Health and PIDs

IPOPI held a PID Forum on the topic of “Breaking the silence on mental health and PIDs” on December 5th, 2023, at the European Parliament in Brussels. The Forum was co-hosted by the Members of the European Parliament Ms Estrella Durá Ferrandis (S&D, Spain), Tomász Zdechovský (EPP, Czechia) and Radka Maxová (EPP, Czechia).

The meeting was organised on this topic due to the high attention mental health has received at Union level and how little has been said on the specificities of persons with chronic and rare diseases, such as primary immunodeficiencies, and mental health. The objective of the Forum was to really focus on the challenges faced by individuals with a PID and their carers, and how sometimes, the PID itself can bring along symptoms associated with mental health problems. The speakers of the event included:

– Jose Drabwell, IPOPI board member, providing an overview of mental health and PIDs.
– Dr Virgil Dalm, from Erasmus MC, explaining the relationship between PIDs and symptoms associated to mental health problems.
– Vida Ramsak, patient representative from the Slovenian Society for Immune Disorders, providing her personal experience.
– Ellen Desmet, board member of the Belgian Patient organisation for Primary Immunodeficiencies (BePOPI), bringing in the perspective of the carer of a person with a PID.
– Rosalind Fisher, President of the International Nursing Group for Immunodeficiencies (INGID);
– Janne Houben, clinical psychologist, and behavioural therapist from University Hospital Leuven.

With an aim of bringing EU national member organisations closer to the EU institutions, IPOPI provided three travel grants to patient representatives from Estonia, the Netherlands and Spain.

The Forum report and a Call to Action highlighting the most important aspects will be prepared and shortly shared on the IPOPI’s social media and website.

IPOPI would like to thank CSL Behring, Grifols, Takeda for their continued support.