Business
Edge Group of Companies — Kelly du Plessis is wife and mother of 2 children (aged 10 and 8) and the CEO & Founder of Rare Diseases South Africa, a registered NPO. Rare Diseases SA was born out of necessity when her oldest child was diagnosed with Pompe disease at 11 months old. Pompe disease is a rare, neuromuscular disorder which is fatal if left untreated. At the time, treatment for this rare condition was not available in South Africa, and so Kelly’s personal journey of patient advocacy started. Challenges Facing RDSA "One sector who understands the need to innovate on a limited budget, its us, as we don’t have the promise of “sales when lockdown is over”. Our sector is solely reliant on the collective economy bouncing back” "We are not a consideration in the relief fund that has been set up for business across South Africa" "Despite our continued contributions to the Civil Society COVID-19 response, our participation in the Presidential Health Compact, the continued efforts in reducing mortality in the most vulnerable of society, and our constant efforts to improve the healthcare of every citizen in this country" "We are reliant on those struggling businesses and corporate for donations" About RDSA Rare Diseases South Africa NPC provides a voice to the vulnerable in the healthcare sector. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the South African rare disease community, Rare Diseases South Africa strengthens the patient voice and shapes research, policies and patient services. Improving quality of life takes advocacy, support for research and medicine development, facilitating networking amongst patient groups and caregivers, raising general awareness with key stakeholders and the broader community and providing a platform for key discussions when it comes to inclusive healthcare. Follow @rarediseasessa on Facebook / Twitter / Instagram or LinkedIn. For more information, visit rarediseases.co.za Rare Diseases South Africa NPC · 2020 Upcoming RDSA Events to support.pdf — PDF (23.3 KB)