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rare

research

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RDSA research focuses on key, patient centric issues relevant to the local and global rare disease and congenital disorder communities. Targeted projects provide an evidenced-based foundation for our advocacy work, connect researchers and patients, and highlight the lay expertise of those living with rare diseases and congenital disorders.

the benefits of joining

  • Receiving up to date information on the rare disease and congenital disorder landscape in South Africa, and globally.

  • Support and assistance with medical aid requests.

  • Peer-to-peer support (connect with others HCPs treating conditions that you are working on)

  • Access to educational support (CPD events)

  • Access to latests research and clinical trial news

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  • Helps us improve the data on prevalence and incidence of various rare diseases and congenital disorders,

  • We are able to develop a referral network across HCPs with specific interests

  • We get a better understanding of what our community needs.

how you joining helps us at RDSA

costs for
academic researcher

  1. Registered Healthcare Professionals:

       R525 per annum

  1. Students registered at a relevant academic institution: R157.50 per annum

register today as a
academic researcher and help us strengthen the rare community 

Personal & Institutional Details

Multi-line address

Research Focus

Which type(s) of research best describe your work? (Select all that apply)
What stage(s) of the research process are you involved in?
Do you collaborate with any clinical sites or hospitals?
Yes
No
Are you currently supervising postgraduate students working on rare diseases?
Yes
No
Not currently but open to it

Are you currently supervising postgraduate students working on rare diseases?

How would you like to engage with RDSA? (Select all that apply)
Would you like to be listed on RDSA’s Researcher Directory to promote collaboration and visibility?
Yes (public listing with basic info)
Internal use only
Would you be interested in joining or co-chairing an RDSA-led Working Group? (Select all that apply)

Research Outputs & Partnerships

Are you currently part of any national or international rare disease networks or consortia?
Yes
No
Do you currently collaborate with patient groups or advocacy organisations?
Yes
No
Would you be open to mentoring emerging researchers or patient advocates?
Yes
No
Possibly in future
How is your research currently funded? (Select all that apply)
Would you be interested in RDSA’s assistance in identifying funding opportunities or research partners?
Yes
No
Membership Options
Would you consider making a once-off or recurring donation to support RDSA’s research and data initiatives?
Yes, once off
Yes, re-occuring
No, unfortunately I am unable to donate

Consent

upcoming events

Upcoming Events

  • IIH Awareness Month
    IIH Awareness Month
    01 Sept 2026, 09:00 – 30 Sept 2026, 23:50
    Online Platforms
    01 Sept 2026, 09:00 – 30 Sept 2026, 23:50
    Online Platforms
    Idiopathic Intracranial Hypertension (IIH) is a rare neurological disorder that predominantly affects women who are in their child-bearing years. It can also occur in men, in those with normal body weight, and without fully meeting the Dandy criteria.
  • World Physiotherapy Day
    World Physiotherapy Day
    08 Sept 2026, 00:00 – 23:50
    Online Platforms
    08 Sept 2026, 00:00 – 23:50
    Online Platforms
    World PT Day theme is healthy ageing, with a focus on preventing falls and frailty
  • World First Aid Day
    World First Aid Day
    09 Sept 2026, 00:00 – 23:50
    Online Platforms
    09 Sept 2026, 00:00 – 23:50
    Online Platforms
    World First Aid Day raises awareness about the crucial role of First Aid in saving lives. The mission is to encourage everyone to commit to learning first aid and equip themselves with the skills needed to act swiftly and effectively in emergencies.
  • International Gynaecological Health Day
    International Gynaecological Health Day
    10 Sept 2026, 00:00 – 23:50
    10 Sept 2026, 00:00 – 23:50
    Online Platforms
    This awareness day emphasises the critical importance of gynaecological health as foundational to a woman’s overall wellness. It centers on raising awareness that regular gynecological care—covering the uterus, ovaries, fallopian tubes, and vagina—is vital for hormonal balance, reproductive function
  • World Alzheimer's Month
    World Alzheimer's Month
    12 Sept 2026, 00:00 – 23:50
    Online Platforms
    12 Sept 2026, 00:00 – 23:50
    Online Platforms
    World Alzheimer's Month takes place every September and World Alzheimer's Day is on 21 September each year. It's a global opportunity to raise dementia awareness and support people affected by the disease.
  • World Sepsis Day
    World Sepsis Day
    13 Sept 2026, 00:00 – 23:50
    Online Platforms
    13 Sept 2026, 00:00 – 23:50
    Online Platforms
    The global focus is stronger than ever: reducing sepsis-related deaths, promoting prevention, and spotlighting milestones in the 2030 Global Agenda for Sepsis.
  • World Lymphoma Awareness Day
    World Lymphoma Awareness Day
    15 Sept 2026, 00:00 – 23:50
    Online Platforms
    15 Sept 2026, 00:00 – 23:50
    Online Platforms
    World Lymphoma Awareness Day is observed annually on September 15 to raise awareness about lymphoma, a type of cancer affecting the lymphatic system.
  • World Patient Safety Day
    World Patient Safety Day
    17 Sept 2026, 00:00 – 23:50
    Online Platforms
    17 Sept 2026, 00:00 – 23:50
    Online Platforms
    World Patient Safety Day (WPSD) is observed annually on 17 September, as established by the World Health Assembly resolution WHA72.6. It serves as a global call to action, uniting patients, families, health workers, policymakers, and civil society to advance patient safety worldwide.
  • Usher Syndrome Awareness Day
    Usher Syndrome Awareness Day
    20 Sept 2026, 00:00 – 23:50
    Online Platforms
    20 Sept 2026, 00:00 – 23:50
    Online Platforms
    This day we aim to raise awareness about Usher syndrome, a genetic condition that causes combined deafness and blindness.
  • RDSA 2026 Family Fun Day_JHB
    RDSA 2026 Family Fun Day_JHB
    24 Sept 2026, 12:00 – 16:00
    51 Donovan St, 51 Donovan St, Glen Austin AH, Midrand, 1685, South Africa
    24 Sept 2026, 12:00 – 16:00
    51 Donovan St, 51 Donovan St, Glen Austin AH, Midrand, 1685, South Africa
    Join us for a fun-filled Family Day where families, friends, and community members come together to connect, relax, and create lasting memories. Here you will enjoy games, outdoor activities, quality family time, and the opportunity to build meaningful connections.
  • World Lung Day
    World Lung Day
    25 Sept 2026, 00:00 – 23:50
    Online Platforms
    25 Sept 2026, 00:00 – 23:50
    Online Platforms
    The respiratory conditions have a significant societal and economic cost, with the burden negatively affecting healthcare systems, impacting the lives of patients and their families, lowering productivity, and widening the gap in life expectancy between the poorest and wealthiest. A significant prop
  • World Contraception Day
    World Contraception Day
    26 Sept 2026, 00:00 – 23:50
    Online Platforms
    26 Sept 2026, 00:00 – 23:50
    Online Platforms
    World Contraception Day is observed on September 26th each year. This day aims to raise awareness about contraception and empower individuals to make informed choices regarding their sexual and reproductive health.
  • World Rabies Day
    World Rabies Day
    28 Sept 2026, 00:00 – 23:50
    Online Platforms
    28 Sept 2026, 00:00 – 23:50
    Online Platforms
    This year on September 28, we are calling on you, me, and our communities to make a difference now!
  • World Heart Day
    World Heart Day
    29 Sept 2026, 00:00 – 23:50
    Online Platforms
    29 Sept 2026, 00:00 – 23:50
    Online Platforms
    Every year, over 17 million people die from heart disease. As a way to fight this, the World Heart Federation created World Heart Day. It’s an event held every year on September 29.
  • National Polio Eradication Week
    National Polio Eradication Week
    29 Apr 2027, 00:00 – 05 May 2027, 23:50
    Online Platforms
    29 Apr 2027, 00:00 – 05 May 2027, 23:50
    Online Platforms
    National Polio Eradication Week is a significant campaign in South Africa aimed at raising awareness about immunisation and the prevention of polio.
looking for disease-related information? check out our 
Rare Research Hub
looking for disease-specific testing? check out our 
Lab Hub
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Physical Address

Kingfisher House, 39A Kingfisher Road, Fourways 2191 Johannesburg,

South Africa

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NPO: 120-991 

NPC: 2016/071131/08 

PBO: 930060119

©2025  Rare Diseases South Africa NPC

Rights reserved

RDSA Privacy Policy 

Rare Diseases South Africa

NPO 120-991

Kingfisher House, 39A Kingfisher Road, Fourways, 2191, South Africa 

(“the Organisation”)

 

MANUAL PREPARED IN ACCORDANCE WITH SECTION 51 OF THE PROMOTION OF ACCESS TO INFORMATION ACT NO. 2 OF 2000

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