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Symposium addresses improving the quality of life for those impacted by rare diseases

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The Rare Diseases Access Initiative (RDAI) in association with Rare Diseases South Africa (RDSA) will be hosting a mini symposium on 25 August 2021, which aims to increase awareness of rare diseases in South Africa.

The symposium will address existing challenges and explore possible solutions for those affected.

People with rare disease often have complex needs and face unique challenges. It is estimated that a rare disease affects less than 1 in 2000 people in South Africa. There are approximately 7000 different rare diseases described to date.

The challenge is to improve equitable access for those who need, but who do not currently have, access to the appropriate diagnosis, treatment, and healthcare services regardless of healthcare sector utilised.

The RDAI was formed as a coalition of interested groups, with the aim to promote an environment which is favourable for those with rare diseases. Participants in the RDAI and supporters of the objectives are the Board of Healthcare Funders (BHF), the Health Funders Association (HFA), the Innovative Pharmaceutical Association South Africa (IPASA), and Rare Diseases South Africa (RDSA).

Some of the key discussion points at the symposium include research, access to treatment, access to services, co-ordination of care, data collection and collaborative research.

The presentations will contribute to the refinement and acceptance of a framework document which calls for action on the part of patients, healthcare practitioners, government, researchers, payers and industry towards a national coordinated and collaborative approach.

Keynote speakers include:

  • Dr Nicholas Crisp: Deputy Director General National Health Insurance, NDoH
  • Dr Natalie Mayet: Deputy Director at the National Institute for Communicable Diseases
  • Prof Shahida Moosa: Professor of Medical Genetics (Stellenbosch University).

Watch the video clip below to find out more:

The goal of patient advocacy co-host RDSA, is to ensure that people living with rare diseases and congenital disorders experience greater recognition, support, improved health service and better overall quality of life.

South Africans living with rare diseases could have extended and improved lives if they are able to freely access appropriate healthcare services without barriers. The objective of the symposium is to mobilise stakeholders towards the formulation and eventual adoption of effective rare disease policy to transform patients; lives.

For further information on this event contact:

Sharon Pruss

Rare Diseases South Africa (RDSA)

Cell: +27 83 292 5506

Office: +27 10 594 3844