What was the conference about?
The second biennial Rare Diseases Conference (RareX 2018) took place from 13 to 16 September 2018 at The Canvas Riversands in Fourways, Gauteng. The theme of the conference was “Advocating for Patient-Centred Healthcare”. The purpose of the conference was to provide a forum for rare disease patients, doctors, and stakeholders to connect and collaborate, and to facilitate an ongoing dialogue on rare diseases and their treatment.
RareX 2018 brought together South African, African, and international rare diseases communities, as well as policymakers and government agencies responsible for matters related to healthcare and health insurance. Stakeholders delivering essential services to the rare diseases community such as disease-specific drug manufacturers and makers of health-related consumables also attended.
An important part of the conference community are the patient support groups that attended. While disease- or condition-specific, support groups shared missions and objectives and learnt from each other’s outreach techniques and fundraising methods and sawsee how other groups serve their communities’ needs.
Via panel discussions, presentations, and networking, the conference presented a comprehensive dialogue which provided insightful guidance to the rare diseases community. In addition to the technical programme of presentations and panels, the conference offered a social programme of a Welcome Networking Function and Rare Diamond Awards Dinner.
The Rare Diseases Conference provided patients, families, and stakeholders with a professional and structured yet caring and inclusive environment in which to learn and network.
Who attend?
RareX 2018 was multidisciplinary and for all those in the rare diseases community: patients, doctors, caregivers, stakeholders.
- Academics
- Biotechnologists
- Clinicians
- Disease-specific drug manufacturers
- Epidemiologists
- Funders
- Healthcare professionals
- Pathologists
- Patient advocates
- Patient support groups
- Patients, families, and caregivers
- Pharmaceutical companies and manufacturers of devices and consumables
- Pharmacists
- Policymakers and regulatory agencies
- Rare diseases associations
- Researchers
About the host organisation
Rare Diseases South Africa (RDSA) advocates for those impacted by rare diseases and facilitates engagement between patients and those with the ability to prevent, intervene, treat, and provide supportive care for rare diseases.
RDSA is today a programme-oriented advocacy organisation for awareness, change, and improvement who is working toward more patient-centred healthcare.
Mission
To advocate for those impacted by rare diseases and facilitate engagement between patients and those with the ability to prevent, intervene, treat, and provide supportive care for rare diseases.
Objectives
- Patient Navigation: Ensure a challenge-free and supported journey from presentation of symptoms to end-of-life for patients affected by rare diseases.
- Advocacy and Expanding Access: Represent patients affected by rare diseases with regards to policy, healthcare costs, and healthcare delivery.
- Community Engagement: Collaborate with civil society to ensure greater awareness and networking platforms for rare diseases in South Africa.
