Imagine the panic and anguish when hearing these words again and again in a hospital emergency room or the pain of watching a loved one - perhaps a child - struggle to hold onto life. Imagine having the knowledge that help was within reach. It just never came soon enough.
As their disease progresses, some find that their health deteriorates much faster than the healthcare system can provide for their needs. In some cases, their condition can deteriorate to the point where they can no longer be treated and, unfortunately, die. , although definitions may vary between countries. Many rare diseases are genetic and are present throughout a person's life, while others may develop later in life due to infections, environmental factors, or other causes.
Due to the low number of rare disease conditions being diagnosed, especially within smaller countries like South Africa, there is often limited research funding and attention devoted to them. This can hinder the development of new treatments and slow down progress in understanding the disease. Facilitated by the Council for Medical Schemes , the current appeals process through which patients can try to force their medical aid to change a decision is also inefficient and vulnerable to delay tactics. These delays and subsequent legal battles can also take years. Years that many rare disease patients simply cannot afford to wait.
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