October 19, 2018

NMO Focus – SAS, the Netherlands

Early days of SAS 

IPOPI’s NMO in the Netherlands

In the magazine “Margriet Medisch” from September 1983, a mother described in detail her experience with her son who had a primary immune deficiency. She was trying to find other interested parties to set up a contact group for patients with a primary immune deficiency. Her open call was repeated in the magazine ‘Parents from now’ of November 11, 1983. There were many reactions! This came to an informative meeting set up by Mrs van Oosten, Dr Schuurman and Dr Schot on February 4, 1984. During this meeting, a provisional board was formed, and it was also decided to issue a newsletter.
The first goals and objectives of the “Association for Immune Disorders” (the first name for SAS) were also set up. In November 1985, the “Foundation for Immune deficiencies” (SAS) was established and in 1986 a Medical Advisory Board was instated. At national level, SAS quickly joined the Association of Collaborating Parents and Patient Organizations (VSOP) and at international level, the International Patient Organisation for Primary Immunodeficiency’s (IPOPI) in 1996 and Eurordis.

Recent highlights

WPIW family day

After the big success of the 2017 edition of our WPIW family day, the 2018 event grew to almost the double of participants. There were 9 workshops dedicated to the impact of having an immune disorder, bacterial resistance, newborn screening, among others, and there were also several creative, picture perfect workshops and various children’s activities. A very special and beautiful day in which people met each other, gain new insights and innovative ideas and got inspired by one another. Participants went home with a feeling of inspiration and satisfaction.

Ladies day

Ladies day was a highlight of 2017. This day was set up especially for women with a PID or women who are a family member of a patient with a PID. They shared their experience of living with a PID, as a patient, mother, daughter or sister. A coach guided the conversation so the ladies got to know each other better and the conversations came to a deeper level.

Young adults weekend

The SAS outdoor weekend “survivalist with an immune disorder” is organised for young adults from 16 to 35 years of age. This year we organised the SAS young adults’ weekend for the 5th time which shows well its success! Under professional guidance from an outdoor events’ organisation, the participants ventured into a variety of activities including a quad driving course and a ‘high team adventure’ with climbing activities. On Saturday evening there was time for exchanging experiences on how to deal with an immune disorder with a workshop ‘applying self-treatment’. A challenging and exciting experience.

PID Awareness

SAS is raising awareness with the campaign “Always ill”. We inform people about primary immunodeficiencies and how to recognise and treat them. “Always ill” leaflets are placed in waiting rooms of family doctors and in pharmacies. Each year SAS has a stand at a yearly health fair and on the family doctors’ fair.

SAS Family Day

SAS Family Day – activities for children

Activities in the pipeline

Project WJWIH ‘Do you know what I have?’

This is a new project that involved developing educational material for primary school children. These materials help explain to classmates and teachers what it means to live with a PID. They will be available in both digital and printable forms at the end of this year.

WPIW conference
We are setting up a conference during WPIW bringing together specialists, nurses, researchers, healthcare policymakers, pharmacists and patients. New information, insights and experiences will be shared, and we hope to raise awareness of PIDs by bringing together different perspectives.

SAS board
The board will be saying goodbye to our secretary, Kees Waas, who has been a member of the board for 25 years now. Kees has been invaluable for SAS and one of the few people who has been present from almost the beginning. We will miss his efforts and presence during the board meetings and during meetings with other stakeholders.
We are thankful for everything Kees has done and we wish him and his family all the best!

SAS ladies day

Young adults weekend

Awareness campaign