Recognition of Rare Diseases as a PMB with the Council of Medical Schemes
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As some of few might know my son,Shaun was diagnosed with a rare genetic disorder classified as Marfan Syndrome which in layman's terms is a complete of connective tissue characterised with multiple enlarged organs and a reduced life span. Children like my son affected by rare diseases in South Africa are the voiceless and powerless due to a lack of infrastructure, few medical specialists and a continuous fight with medical aid schemes in treating their diseases as chronic conditions under medical schemes PMB,s.
Shaun by the grace of God and as a child with a constant fighting spirit who despises self pity and being viewed as a victim of his genealogy has given birth to my motivation and drive to take the fight further by any means possible not only as a Mother frustrated with regulations but as a human being to commence change. There is a rather old saying which has been the planted seed for our drive which as follows " The journey of a thousand miles begins with a single step"
Our first strategy will commence with a petition to the Council of Medical schemes aimed at securing as many signatures as possible across multiple platforms with the primary outcome forced at recognition of not only Marfan Syndrome but all rare diseases as PMB,s which will provide access to the voiceless like Shaun to access chronic cover and recognition of their fight.
I am pleading with as many as possible to add your signature to this upcoming petition as a one more signature is one more voice demanding to be heard.
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