PINSA presentation at ASID conference in Algeria 2015

2. Overview
• Vision
• Background
• Challenges
• History
• Strategic Plan
• Governance
• Implementation Plan
• Relationships
• Support
• Communication Tools
http://www.pinsa.org.za
pinsahelp@mweb.co.za

3. To ensure that people with Primary Immunodeficiency
in South Africa receive optimal treatment and support
http://www.pinsa.org.za
pinsahelp@mweb.co.za
Vision

4. Background
• 54 million people
• 11 official languages
• 21 years of democracy
• 9 provinces
• 2.8 million taxpayers
• +/- 4000 undiagnosed patients
http://www.pinsa.org.za
pinsahelp@mweb.co.za

5. South Africa
http://www.pinsa.org.za
pinsahelp@mweb.co.za

6. Challenges
• Distance and terrain
• Awareness
• Language
• Connectivity
• Competing priorities
• Under recognised by government health system
• Unequal access to treatment
• Lack of capacity (volunteer association)
• Under-diagnosis – no local diagnostic or treatment
guidelines
http://www.pinsa.org.za
pinsahelp@mweb.co.za

7. History
• Constituted in 2001
• Registered Non Profit Organisation (NPO)
• 14 patients diagnosed
• Voluntary group parents and patients
• Committee: Chair, Vice Chair, Treasurer and
Secretary
• Medical Advisory Panel (MAP)
http://www.pinsa.org.za
pinsahelp@mweb.co.za

8. Strategic Plan
Strategic objectives
• SUPPORT
• AWARENESS
• INFORMATION
• FUNDRAISING
• LOBBYING
• TRAINING
http://www.pinsa.org.za
pinsahelp@mweb.co.za

9. Governance
Organisational Manual
• Governance
• Roles and responsibilities of Office Bearers
• Financial Management
– Claim procedure
– Central bank account
– Monthly statements
– Annual Financial report
• Communications
– e-Mail
– Telephonic
– Reports
• Meetings:
– Committee Meetings
– Annual General Meeting
– Special Meetings
• Template Toolkit
– Planning
– Letters
– Meetings
– Finances
– Reports
– Advocacy
http://www.pinsa.org.za
pinsahelp@mweb.co.za

10. Implementation plan
http://www.pinsa.org.za
pinsahelp@mweb.co.za

11. Relationships
• International Patients Organisation for PID (IPOPI)
• International Nurses Group for Immunodeficiencies (INGID)
• Immune Deficiency Foundation (IDF)
• Jeffery Modell Foundation (JMF) (WIN)
• Rare Diseases South Africa (RDSA)
• Medical Aid Schemes
• Product manufacturers
• Plasma Protein Therapy Association (PPTA)
• International Plasma Fractionation Association (IPFA)
http://www.pinsa.org.za
pinsahelp@mweb.co.za

12. Support
• Telephonic support
• Member mailing list support
• Flyers
• Booklets
• Regional meetings
• Conferences
http://www.pinsa.org.za
pinsahelp@mweb.co.za

13. Communication Tools
Social media
• Facebook
• Linkedin
• Twitter
• Website
• Google Group – PiNSA_Link
http://www.pinsa.org.za
pinsahelp@mweb.co.za

14. http://www.pinsa.org.za
pinsahelp@mweb.co.za
Facebook

15. http://www.pinsa.org.za
pinsahelp@mweb.co.za
Website