To ensure that people with Primary Immunodeficiency in South Africa receive optimal treatment and support.
PiNSA is a voluntary Non-Profit Organisation (NPO) South African patient driven association dealing with Primary Immunodeficiencies (PID). PiNSA exists to implement the following strategic objectives:
- SUPPORT: provide support to patients and their families
- AWARENESS: create awareness of the condition in both the medical and wider community through a vibrant and active advocacy programme
- INFORMATION: provide accurate and reliable information to patients, their families and the medical community
- FUNDRAISING: ensure sustainability of PiNSA through the co-ordination of an effective fundraising programme
- LOBBYING: ensure support from all stakeholders including government, statutory bodies, suppliers and medical aids through an active lobbying programme
- TRAINING: provide a training programme for immunology nurses and doctors
Annie Pienaar; Chairman and Trustee
Chantelle Richards; Treasurer
Mariana du Toit; Secretary
Joy Rosario; Founder and Trustee
Caroline McGibbon; Trustee
Medical Advisory Panel
Dr Jonny Peter, Medical Advisory Panel
Dr Andre Van Niekerk, Ex Officio ALLSA/Medical Advisory Panel
Dr Monika Esser, Medical Advisory Panel
In 2000 the parent of one of the patients, Mrs Joy Rosario, was approached by IPOPI to set up a patient organisation with IPOPI seed funding in South Africa, other attempts having failed through lack of support.
PiNSA was duly constituted at the Red Cross Children’s Hospital in Cape Town in 2001. A small committee was formed, the name decided and a constitution agreed upon. It was decided that there would be three branches to the association alongside the main committee; one in Durban, KwaZulu-Natal, one in Cape Town, Western Cape and one in Johannesburg, Gauteng.
The association existed for many years as an information and support group, mainly through the website (latterly thanks to sponsorship from Tristar) and telephonic counselling. In 2006 Dr Monika Esser lent her support to PiNSA and became the Medical Advisory Panel doctor. In 2008 funding was provided by the Binding Site for a secretary. Regular newsletters, an updated membership list and patient meetings in the Western Cape were the outcome. Around the same time the national South African PID registry was set up by Dr Esser. In 2009 the Jeffery Modell Foundation, through their organisation WIN, made a donation to PiNSA although this was conditional on it not being used for transport claims.
In December 2010 the call went out to interested patient/parents on the membership list to act on the national committee and the outcome was a meeting funded by IPOPI at which a new committee was formed. The AGM is between March to May each year.
Click here to read a copy of the Constitution
The organisational structure was re-established at the meeting in 2010 and six strategic objectives agreed upon. It was decided that in the short term, these objectives would be implemented on a national level and in the longer term, each province would be encouraged to set up a branch. The concept was that each branch will have a PiNSA member as a branch co-ordinator but will also include a doctor and a trained immunology nurse. The provincial branches will support and implement the strategic objectives but on a local level, and will report to, and be guided by the national committee.