October 9, 2023

SAS organises grand PID Event

After we heard, in Portugal (IPIC 5th edition), that IPIC2023 would take place in the Netherlands, we quickly decided this was an opportunity we didn’t want to miss. We went into brainstorming mode with many plans that we wanted to implement and we swiftly contacted Takeda to help us organise a post-IPIC event for our members as a way to involve them in what IPIC2023 was all about.

A pitch in which we explained our plans and a call later and it was decided – yes, let’s organise an event. After several brainstorming sessions, we came to the conclusion that we should organise an event for all PID patients in the Benelux (Netherlands and Belgium), regardless of whether or not they are members of SAS (Stichting voor Afweerstoornissen).

Precisely because we also wanted to involve PID patients in this event, we made a promotional video for the website and social media. We contacted specialists in the seven academic/university hospitals we have in the Netherlands to get them actively involved and to promote the event amongst their PID patients. An app was also created for the event, with the programme, general information, word clouds and a survey.

A famous Dutch TV presenter (Tooske Ragas) hosted the day, which included:

  • the PID show; a round table discussion with patients in different stages of their life (young adult, adult and near-retiree) and specialists (paediatrician, physician and home nurse)
  • 4 breakout sessions
    • Joint decision making
    • Personalised care
    • Social Support Act
    • From blood donor to plasma product
  • Motivational speaker about artificial intelligence digitalisation in healthcare

During the breakout sessions, the participants discussed various statements under the expert guidance of various immunologists and specialised nurses, such as:

‘The patient is crucial in providing personalised care’.

‘Personalised care is not a luxury, but a must in PID expert centres’.

From the age of 12, children must be consulted separately from their parents to hear what the child’s wishes are.

‘Home care is always better than hospital treatment’.

With over 100 participants and a lot of interest in our stand (and hence new members) we can call it a successful day.

We shared, connected, and had many questions answered with regard to the impact of having a PID. How do you experience PID in your daily life? Every experience is unique, there are similarities, but there are also differences. Everyone is different, experiences are different and yet we have one thing in common: a PID.’

Without the help of Takeda and all the specialists and SAS volunteers involved, we could not have made this day such a success. We are incredibly proud that we were able to organise this wonderful event.

The website pidevent.nl is still active if you want to check it out!