29 June 2012 SECTION 1: THE EVENT Introduction A capacity building programme for patient representatives involved at the European level in the development, approval, information and access to orphan drugs, paediatric drugs and advanced therapies. There were 37 attendees at the training from 17 countries, representing 28 rare diseases. Ms Joy Rosario. Chair of PiNSA…
Primary Immunodeficiency Disease (PID) is a rare condition whereby patients cannot fight off infections or viruses due to a compromised immune system. There are over 400 types of PID and, compared to international statistical data for incidence of PID, South Africa has a fraction of the number of patients diagnosed. This means that people with…
July 2014 This PiNSA statement supports international calls to ensure access to the best suited immunoglobulin (IG) replacement therapy, as prescribed by physicians for patients living with a primary immunodeficiency (PID)[1] that requires IG replacement therapy. It is estimated that there are between 20,000- 40,000 South Africans living with PID, of whom 99% remain undiagnosed….
