For those affected by rare disorders, the sense of loneliness and lack of understanding from the greater community can sometimes be as overwhelming as the disease itself. The SAFRD is creating a network of those who truly understand and can provide real help to those affected by certain rare disorders.
For the first time in South Africa, those affected by rare disorder have access to the emotional support of fellow patients with whom they can share their experiences of living with a rare disorder thereby helping them to expand their knowledge and understanding of their disease.
The SAFRD was established with the assistance of Genzyme Biopharmaceuticals South Africa at the end of 2008. Some of the goals of the SAFRD include lobbying for the rights of patients and access to therapy, providing patients with access to up to date information, emotional support, and possibly financial assistance. The SAFRD also strives to foster a better understanding of rare disorders among communities throughout South Africa through public relations, awareness campaigns and fundraising.
The SAFRD also endeavours to interact with doctors to improve their knowledge of the conditions and maximize patient outcomes, and with other international organizations, to share the newest information on medical findings and newly developed treatments |
