Below is a list of credible organisational resource links which we hope you will find useful.
- PiNSA – Primary Immunodeficiency Network of South Africa
Our voluntary association was founded in 2001 and provides support and information to patients and families. We have a website, as well as a Twitter and Linked In profile and a Facebook community group open to the public.
Website: https://pinsa.org.za/
Twitter: https://twitter.com/PiNSA_ZA
Linked In: https://www.linkedin.com/profile/view?id=334672354&authType=OUT_OF_NETWORK&authToken=5P51&locale=en_US&trk=tyah2&trkInfo=tarId%3A1407144904261%2Ctas%3Apinsa%2Cidx%3A1-1-1
Facebook Community: https://www.facebook.com/pages/PiNSA/374099042663770?ref=ts&fref=ts
- IDF – Immune Deficiency Foundation
The IDF is based in the United States and has a strong following of over 5000 members. The website has a lot of resources including the Patient and Family Handbook, this is highly recommended!
http://primaryimmune.org/idf-publications/patient-family-handbook/
- JMF – Jeffrey Modell Foundation
The JMF was established in 1987 by Fred and Vicki Modell in memory of their son Jeffrey, who died at the age of fifteen, from complications of Primary Immunodeficiency (PID). JMF is a global nonprofit organization dedicated to early diagnosis, meaningful treatments and, ultimately, cures through research, physician education, public awareness, advocacy, patient support and newborn screening. Their new website is a village and has some wonderful information on it.
- IPOPI – International Patient Organisation for Primary Immunodeficiencies
PiNSA has been a member of IPOPI since our inception as it is IPOPI that provided our seed funding and support. IPOPI has a bi-annual conference in Europe in conjunction with ESID (doctors) and INGID (nurses). Publications include those listed below and more…
- IPOPI Patient Information Leaflets – Vaccines and PIDs, Autoimmunity and Plasma-derived therapies
- IPOPI Patient Information Leaflets – Diagnosis of PID, Moving from Child to Adult care and PID in adults
- IPOPI Patient Information Leaflets (Treatment, General Care and Information to Schools)
- Booklets on 6 primary immunodeficiencies
- Useful industry links below
- Treating PI (a patient information site on PID by CSL Behring) – http://www.treatingpi.com/
- Baxter patient info on PID – http://www.baxter.com/patients_and_caregivers/therapies/primary_immune_deficiency.html
- National Bioproducts Institute – http://www.nbi-kzn.org.za/
- Octapharma – http://www.octapharma.com/en/patients/diseases-therapies/immunotherapy.html
- Mirren – http://www.mirren.co.za/
- RMS Freedom 60 infusion pump – http://www.rmsmedicalproducts.com/?node=products&item=f60