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rare

research

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

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

Registered Healthcare Professionals:

R525 per annum

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

First name

Last name

Email

Phone

Institution / University / Organisation Name

Title

Institutional Website or Profile Link (if applicable)

Multi-line address

Country/Region

Address

City

Zip / Postal code

Upload a professional headshot (Helps us connect faces to our network; never shared without consent.)

Research Focus

What is your primary research area?

Which rare diseases or related conditions does your research focus on?

Which type(s) of research best describe your work? (Select all that apply)

Basic / Translational Research

Clinical Research

Epidemiological / Population Studies

Health Systems / Policy Research

Social Science / Psychology / Quality of Life

Bioethics or Legal Research

Other

What stage(s) of the research process are you involved in?

Study design

Data collection

Data analysis

Publication

Knowledge translation

Do you collaborate with any clinical sites or hospitals?

Yes

No

If yes, please list your collaborating institutions or departments.

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?

What motivated you to join Rare Diseases South Africa?

How would you like to engage with RDSA? (Select all that apply)

Access to patient community for ethically approved research

Data-sharing or registry collaboration

Policy or guideline development input

Translational or implementation research

Student project supervision or mentorship

Participation in joint publications or conferences

Rare disease education or training activities

Public science communication or awareness collaboration

Other

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)

Diagnostics and Genomics

Health Systems and Policy

Patient Registries and Data

Social & Economic Impact

Access to Therapies

Education and Awareness

Ethics & Governance

Other

Research Outputs & Partnerships

Are you currently part of any national or international rare disease networks or consortia?

Yes

No

If Yes, please list them (e.g., IRDiRC, GA4GH, RDI, etc.)

Do you currently collaborate with patient groups or advocacy organisations?

Yes

No

If yes, please specify which

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)

University / Institutional Grant

National Research Foundation (NRF)

Department of Health / NHLS

International Grants (e.g., NIH, EU, Wellcome, etc.)

Industry Collaboration

Self-funded / Volunteer research

Other

Would you be interested in RDSA’s assistance in identifying funding opportunities or research partners?

Yes

No

Membership Options

Individual Researcher MembershipR 315

Institutional Membership (incl listing of institution on website)R 1 575

Student MembershipR 150

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

I confirm that the information provided is accurate.

I consent to RDSA storing and processing my information in accordance with POPIA.

I agree to be contacted about relevant research and collaboration opportunities.

upcoming events

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looking for disease-related information? check out our
Rare Research Hub

looking for disease-specific testing? check out our
Lab Hub

Contact us

Telephone +27 10 594 3844
Hotline 072 476 7552
hello@rarediseases.co.za

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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