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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

  • World AIDS Day
    World AIDS Day
    01 Dec 2025, 00:00 – 23:50
    Online Platforms
    01 Dec 2025, 00:00 – 23:50
    Online Platforms
    World AIDS Day is observed on December 1 each year to raise awareness about HIV/AIDS, honor those who have died from the disease, and promote efforts to combat the epidemic.
  • Crohn’s and Colitis Awareness Week
    Crohn’s and Colitis Awareness Week
    01 Dec 2025, 00:00 – 07 Dec 2025, 23:50
    01 Dec 2025, 00:00 – 07 Dec 2025, 23:50
    Online Platforms
    Crohn’s and Colitis Awareness Week is observed from December 1 to December 7 each year, aiming to educate about these common inflammatory bowel diseases and promote understanding and support.
  • National Grief Awareness Week
    National Grief Awareness Week
    02 Dec 2025, 00:00 – 08 Dec 2025, 23:50
    Online Platforms
    02 Dec 2025, 00:00 – 08 Dec 2025, 23:50
    Online Platforms
    National Grief Awareness Week is observed annually from December 2nd to December 8th, aiming to raise awareness about grief and provide support for those affected by loss.
  • International Day of Persons with Disabilities
    International Day of Persons with Disabilities
    03 Dec 2025, 00:00 – 23:50
    03 Dec 2025, 00:00 – 23:50
    Online Platforms
    The International Day of Persons with Disabilities is observed annually on December 3rd to promote the rights and well-being of persons with disabilities and to raise awareness about their situation in society.
  • Join our first annual Rare Year-End Engagement
    Join our first annual Rare Year-End Engagement
    10 Dec 2025, 19:00 – 20:00
    10 Dec 2025, 19:00 – 20:00
    Microsoft Teams
    This year took a lot out of many of us. Before we jump into 2026 and start gearing up for Rare Disease Day, let’s share a moment together. We are not planning a big presentation, no heavy agenda. Just an honest check-in.
  • International Universal Health Coverage Day
    International Universal Health Coverage Day
    12 Dec 2025, 00:00 – 23:50
    12 Dec 2025, 00:00 – 23:50
    Online Platforms
    International Universal Health Coverage Day aims to raise awareness of the need for strong and resilient health systems and universal health coverage with multi-stakeholder partners.
  • The Cape Town Cycle Tour - 2026
    The Cape Town Cycle Tour - 2026
    08 Mar 2026, 00:00 – 12:00
    Cape Town, Shop G13, Adderley St, Foreshore, Cape Town, 8001, South Africa
    08 Mar 2026, 00:00 – 12:00
    Cape Town, Shop G13, Adderley St, Foreshore, Cape Town, 8001, South Africa
    Take on the iconic Cape Town Cycle Tour with purpose by joining #Ride4Rare. Experience breathtaking coastal views and the natural beauty of Cape Town’s world-famous route, all while using your passion and athletic ability to raise awareness and funds.
  • Totalsports Two Oceans Marathon - 2026
    Totalsports Two Oceans Marathon - 2026
    11 Apr 2026, 00:00 – 12 Apr 2026, 23:50
    Cape Town, 11 Main Rd, Newlands, Cape Town, 7700, South Africa
    11 Apr 2026, 00:00 – 12 Apr 2026, 23:50
    Cape Town, 11 Main Rd, Newlands, Cape Town, 7700, South Africa
    Total Sports Two Oceans Marathon is an opportunity to use your mobility to benefit others - our rare diseases community! Sign up today to take part in the world's most beautiful marathon.
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

The Station, 63 Peter Place, Bryanston, Sandton, 2021

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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

The Station, 63 Peter Place, Bryanston, Sandton, 2021

(“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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