October 13, 2017

PiNSA’s recent activities

2017 was full of surprises for PiNSA. Some new beginnings and some ending of old partnerships.  PiNSA attended quite a few activities as shown below and created awareness in several areas.

Attendance at 2017 events
This year started off with an event organized by Rare Diseases South Africa called JEANS4GENES and I represented PiNSA with our Rare Diseases Child (Anle – Ataxia Telangiectasia) who is also a member of Rare Diseases South Africa. The event was held at the Walter Sisulu Botanical Gardens in Johannesburg.

We also celebrated World Primary Immunodeficiency Week 2017 (WPIP 2017) with a small ceremony in Midstream Estate in Centurion by letting loose Ataxia Telangiectasia marked balloons. We had the finalist of Miss Commonwealth South Africa 2017, Ms Elana van Deventer, taking part in it.

We were represented at ASID (African Society for Immunodeficiencies) 2017 that was held in Zambia by me, as PiNSA Chair and as Board Member of IPOPI. Our Vice Chair, Joy Rosario represented PiNSA at the ALLSA Carnival, held at the Groote Schuur hospital in Cape Town, and Chantelle Richards represented us at AFSA (Allergy Foundation South Africa) in September 2017.


  • PiNSA featured for the first time in our popular ChildMag that is distributed to all participating paediatric specialists and baby clinics.
  • PiNSA also hosted the first Western Cape golf day to create awareness on PID and the next golf day is already planned for 2018, as well as a golf day for Gauteng.
  • PiNSA will have an article in the Gauteng West Newspaper in due course; meeting with a PiNSA member in the area was already set up.
  • PiNSA also received the green light to have an article on PID in the Medi Clinic magazine that is a monthly magazine of the Medi Clinic hospital group in South Africa.
  • Joy Rosario resigned as Vice-Chair of PiNSA on November 15, 2017.


  • PiNSA will elect a new Board in due course
  • Events for 2018 WPIW are being discussed
  • Members will be more involved in planning of activities and attending congresses.
  • PiNSA will have a closer relationship with Rare Diseases South Africa. RDSA has agreed to assist PiNSA in the following areas:
    • Distribution of materials that we create and assist with input on materials
    • Help create awareness through a vibrant and active advocacy
    • Lobbying as they are better placed to do this and have the necessary relationships in place.
  • Some of the pre-schools in Gauteng have already agreed to help create awareness for WPIW 2018.

We are ready for 2018 and will plan as many activities as possible to create awareness for PID in South Africa.  The aim is to reach the communities in the rural areas with documentation and flyers on PID.

By Annie Pienaar, PiNSA Chair