The document discusses how patient organizations can contribute to making a difference for those with primary immunodeficiencies. It provides an overview of population statistics in Africa and South Africa, noting that only 118 patients are registered with PINSA, the sole patient support group for primary immunodeficiencies in South Africa. PINSA's vision is to ensure all those with primary immunodeficiencies in South Africa receive treatment and support. The organization aims to provide support, raise awareness, share information, do fundraising, lobby, and provide training. It emphasizes the importance of collaboration between patient organizations, physicians, specialists, and laboratories to help patients.

1. How can Patient Organisations
contribute to make a difference?
Annie Pienaar
Chair: PINSA (Primary Immunodeficiency Network of South Africa)
Board Member: IPOPI
(International Patient Organization for Primary Immunodeficiencies)
ASID Congress 2017
African Society for Primary Immunodeficiency

2. Welcome to all
▶ A special Thank You to the patients attending this
congress - Awareness in Africa is all about our Primary
Immunodeficiency Patients
▶ Thank you to the organising committee and our Trade
partners who help to put together meetings such as this.
Without you this is not possible
▶ I will share a few facts about Africa and then highlight the
role of Patient Organisations using PINSA as an example.

3. Population Africa - 2017
▶ The current population of Africa is 1,237,994,963 as of
Friday, March 24, 2017, based on the latest United Nations
estimates.
▶ 40.5 % of the population is urban
(505,429,407 people in 2017)

4. Population in South Africa
▶ The current population of South Africa is 55 million as of
Friday, March 24, 2017, based on the latest United Nations
estimates.
▶ 64.3 % of the population is urban (35,5 million people in
2017)
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5. Sub-regions in Africa
Area Population (2017)
Eastern Africa (416,676,295)
Western Africa (372,551,411)
Northern Africa (232,186,119)
Middle Africa (161,236,615)
Southern Africa (63,854,425)

6. PID Patient support group South Africa
• Of the 55 billion people living in South Africa, 118 patients
are registered with PINSA (Primary Immunodeficiency
Network of South Africa) - the ONLY Patient Support Group
for Primary Immunodeficiency
▶ PIDSA - registry that is run in Cape Town has approx 300+
but we don’t share information at this stage
▶ Collaborate is a word used a lot in PID but a few
understand the meaning. WE HAVE TO COLLABORATE WITH
PHYSICIANS, SPECIALIST and research laboratories to help
PID patients.
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7. Vision
▶ To ensure that each one in South Africa with Primary
Immunodeficiency receives treatment and support
▶ We are a voluntary non-profit organisation, patient driven
dealing with PID and this is our objectives
1. Support
2. Awareness
3. Information
4. Fundraising
5. Lobbying
6. Training
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8. Patient Support

9. AWARENESS AND FUNDRAISING
High Tea 2015
WPIW 2015

10. CHARITY GOLF DAY
WHERE: Langebaan Golf Club
When: 8 June 2017
Entry: R2500 4-ball
Time: 10HOO
Fist Tee off – 11:36
www.pinsa.org.za
Dinner included
CASH BAR AVAILABLE
Any golf queries:
Bob Parry: +27227722498
Please contact Lize 0827805233 or Annie 0836619162 for bookings
FUNDRAISING AND AWARENESS – 2017

11. TRAINING
Hands-on training on Sub-Cut

12. How can our members contribute?
Mothers/Caretakers of PIDs’ information is crucial:
▶ They experience the first warning signs
▶ They sometimes assist the ‘PID’ child/patient for quite a
few years before they get diagnosed
▶ They get to know the treatment and how to treat side
effects
▶ They can help other parents/caretakers with advice and
positive support
▶ They can refer potential PID’s to specific Doctors/nurses

13. Patient support groups
How can we contribute?
▶ Doctors and nurses are our lifeline
▶ They need to collaborate with the patient support group
and inform them about newly diagnosed patients –
The registry information is crucial to collaborate with medical
aids and research doctors.
▶ More nurses and health care workers should be trained –
rural communities have clinics run by nurses, doctors only
in hospitals.
▶ Posters with PID Warning Signs should be visible in all
hospitals and clinics.
27/03/2017

14. How do we assist our members?
WE ARE:
▶ NOT doctors – we are just a helping hand
▶ NOT medical aid workers – just the spokesperson for
patients
▶ NOT Lawyers – just the advisors to patients – help them
with their queries at medical aids and hospitals
▶ We Facilitate all the activities around PID
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15. CONCLUSION
We can by word of mouth refer potential patients to doctors – once its
your passion – you will know the warning signs.
We can raise awareness in Main Hospitals so that more and more doctors
are aware of the disease that is so miss diagnosed.
We need to collaborate with doctors and have ONE registry/Patient
Organisation per country.
Thank you for helping US (Patient Organisations) to support patients with
Primary Immunodeficiencies