History

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 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. This group of people has always worked on a voluntary basis and, as is the nature of non-profit organisations, has seen changes in the committee composition as for the last twelve years PiNSA has managed to hold an annual AGM.

PiNSA has a clear set of governance guidelines and is clear in the roles and objectives of the organisation. Working in affiliation with Rare Diseases South Africa the association has been with provided with a much-needed platform for lobbying government and medical aid schemes around access to treatment.

2023 sees a new committee with a clear vision for the immediate future. Conscious that there are many undiagnosed patients in South Africa the emphasis will be on ensuring awareness reaches these people and that they are properly diagnosed and treated.