NHI - The impact on the Rare Disease community

The National Health Insurance (NHI) is a financing system that will make sure that all citizens of South Africa (and legal long-term residents) are provided with essential healthcare, regardless of their employment status and ability to make a direct monetary contribution to the NHI Fund.

Rare Diseases South Africa will be hosting a webinar on Wednesday 21 August to explain our interpretation of the current bill as well as our previous submissions on the NHI Bill, as we seek to find gaps that we as the Rare Disease community will seek to address in the consultative process.


Date:  21 August 2019

Time: 19:30

Venue: Zoom

Cost: Free



1) Device: Laptop, tablet or mobile phone

2) Internet connection

3) Zoom


Kelly du Plessis

CEO & Lead Patient Advocate - Rare Diseases SA


Kelly is a wife and mother of 2 children (aged 10 and 8) and the CEO and Founder of Rare Diseases South Africa, a registered NPO.


Rare Diseases SA was born out of necessity when her oldest child was diagnosed with Pompe disease at 11 months old. Pompe disease is a rare, neuromuscular disorder which is fatal if left untreated. At the time, treatment for this rare condition was not available in South Africa, and so Kelly’s personal journey of patient advocacy started.

Having dedicated her life and career to furthering the plight of those impacted by rare diseases in developing countries, Kelly serves on various boards and committees which focus on improving the quality of life for rare patients.

In 6 years, Kelly has taken Rare Disease policy and patient advocacy to new heights in South Africa and has presented at various national and international conferences to raise awareness and create a new narrative in terms of treatment and access for rare patients. Understanding the isolation and lack of support surrounding a rare disease diagnosis, providing a safe place for patients as well as families, and improving patient-centred care has become her passion. With over 6500 patients/families impacted by rare diseases having been assisted over the past 6 years, Kelly has ensured that the patients voice is never forgotten. 

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