A series of publications about our foreign speakers
In anticipation of the II CIS Orphan Forum, which will be held on June 26–27 in Moscow, we are starting a series of publications about our foreign speakers — leading experts in the field of rare diseases from the CIS, BRICS and the Middle East.
South Africa, a BRICS member with a population of about 64 million people, spends 8.27% of GDP on healthcare (about $584 per capita), while the share of government spending is only 42%, and the level of universal health coverage remains relatively low.
The country will be represented at our Forum by a leading expert in the field of rare and congenital diseases - Professor Helen Malherbe, Associate Professor at the Center for Human Metabolomics at the University of the North-West.
Her path in this field began in 2004 after the loss of a child with trisomy 18.
From 2014 to 2019, she headed the public organization Genetic Alliance South Africa, and then until the beginning of 2025, she led research work at the organization Rare Diseases South Africa.
Currently, she is focused on scientific activities:
- conducts research on the effectiveness of neonatal screening
- is engaged in modeling the burden of rare diseases
- works to improve terminology in the field of rare diseases and develop approaches to solving the problem of shortage of specialized specialists.
Professor Malherbe will take part in the plenary session dedicated to discussing the WHO Resolution on rare diseases adopted in May 2025 and the steps needed for its implementation.
The discussion will focus on the potential for cooperation between the CIS and BRICS countries in developing joint approaches to diagnostics, monitoring and ensuring access to therapy for patients with rare diseases.
The Forum will be held online. Participants will be able to join the broadcast in real time and watch the reports, presentations and discussions.
Participation is free!
Registration for the Forum: https://orphan-cis.net/events/92/
