Globally, over 350 million people are affected with rare diseases. In South Africa, it is estimated that 1 in 7 people are affected. Rare Diseases South Africa advocates and facilitates engagement between those with the ability to prevent, intervene, treat and provide supportive care for those impacted by rare diseases. They provide a platform to meet fellow patients and provide support if needed when dealing with medical professionals.
In February this year, Rare Diseases South Africa launched Rare Assist, a case management service with the aim of assisting patients with their medical aid needs. The services include claims submissions and follow-ups, benefit applications and authorisations, as well as specialised applications, such as PMB (Prescribed Minimum Benefits), ex-gratia, etc. The outcome of such services will result in the decrease of the administrative burden of dealing with medical aids, as well as assisting those who do not understand the medical aid benefits which they have access to. This service is not just for patients with rare diseases – anyone with a busy lifestyle and high medical aid needs could benefit from using Rare Assist.
Kim Kinsella, whose daughter is in the Junior Phase at Unity College, is the South African representative for Unique, a UK based charity that supports, informs and networks with families living with rare chromosome disorders. They aim to bring together these families – both in person and virtually – for invaluable mutual support to alleviate the isolation that can be felt on obtaining a diagnosis. By networking with professionals and the wider public, they also aim to increase awareness and understanding of what it’s like to live with these disorders. E-mail Kim if you would like to find out more.