IN CONVERSATION WITH NOMSA MTSHALI PATIENT CO-ORDINATOR (RARE DISEASES SOUTH AFRICA)

Rare Disease Day is observed globally on the last day of February to raise awareness of rare
diseases and the challenges faced by patients and families. In South Africa, it highlights the
need for early diagnosis, better access to treatment, and holistic support for patients living
with rare conditions.

The South African Rare Disease Organisation works to provide education, advocacy, and
patient coordination, helping families navigate the healthcare system. Many rare disease
patients face delayed diagnoses, high treatment costs, and limited access to specialised care.
Awareness campaigns, partnerships with healthcare providers, and patient support networks
are critical to improving quality of life and long-term outcomes.

Nomsa Mtshali, Patient Co-ordinator, engages directly with patients, families, and healthcare
professionals to connect them to resources, clinical support, and advocacy opportunities. Her
work ensures patients are not left isolated, and that public and private health systems are
better informed about the unique needs of this community.

This year’s campaign focuses on encouraging early screening, supporting families, and
building stronger networks between patients, healthcare providers, and policymakers.