The Rare Disease Society of South Africa is a registered NPO for rare diseases & creates awareness about various life threatening rare diseases
To support and provide practical aid to individuals and families affected with rare disorders
To increase awareness on rare disorders through providing information on rare disorders and educate individuals, families, medical professionals, schools, organizations and to the general public.
To establish a network between individuals and families with rare disorders with relevant organizations, professionals, education and intervention centres.
To collaborate with organizations that have the potential to affirm, prevent, improve treatment and increase the quality of life of individuals affected with rare disorders.
The Rare Disease Society of South Africa is a registered NPO initiated by parents with children suffering from LSD (lysosomal storage disorders) to advocate for patients’ rights and create awareness about various life threatening rare diseases (RD)
RD patients form a minority of our society and receive little or no help or attention. Our acknowledgement and investment can make significant changes to RD patients’ quality of life. With timely and accurate diagnosis and intervention, people with rare diseases can contribute significantly and positively towards our society.
We alone cannot take care of our children forever, but a loving society and a well-established system can. So, join us to make a better future for children and adults who have a rare disease. .
Individually rare but collectively common, RD are disorders including those of genetic origin, are life threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them. As a guide, low prevalence is taken as a prevalence of less than 1 per 4000 in the community.