HEALTHCARE PROFESSIONALS | Rare Diseases SA

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SUPPORT GROUP |

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healthcare

registration

professional

the benefits of joining

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

Registered Healthcare Professionals: R525 per annum
Students registered at a relevant academic institution: R157.50 per annum

register today as a
healthcare professional and help us strengthen the rare community

Personal & Professional Details

First name*

Last name*

Title

Email*

Phone*

Multi-line address

Country/Region*

Address*

City*

Zip / Postal code*

Professional Designation (e.g., Specialist Physician, Genetic Counsellor, Nurse, Physiotherapist, etc.)*

Multi choice

Medical Doctor

Geneticist

Allied Health Professional

Pharmacist

Nurse

Researcher / Scientist

Policy / Regulatory Professional

Other (Please specify)

Practice / Institution Name

Clinical Interests & Experience

What are your main areas of clinical or research interest? (e.g., metabolic disorders, neurology, genetics, etc.)

Do you currently treat or manage patients with rare diseases?

Yes

No

If yes, please indicate the rare diseases or conditions most relevant to your practice.

Are you part of a multidisciplinary team that manages rare disease patients?

Yes

No

If yes, please describe your role.

How many patients with rare diseases do you typically see per year? (approximate)

Are you involved in research or clinical trials related to rare diseases?

Yes

No

No, but would like to be

Engagement & Collaboration Preferences

How would you like to be involved with Rare Diseases South Africa? (tick all that apply)

Receive Clinical updates

Participate in awareness campaigns (KOL opportunities)

Be listed as a rare disease referral contact

Contribute to educational webinars or CME events

Collaborate on research or data initiatives

Mentor or support other healthcare professionals

Join advisory committees / working groups

Assist with Medical Advisory Board

Participate in Clinical Advisory groups

Participate in diagnostic programmes (Referral to biobank etc)

Are you open to being contacted for patient referrals or case discussions (with patient consent)?

Yes

No

Are you interested in continuing professional development (CPD) opportunities related to rare diseases?

Yes

No

Would you like to receive updates on treatment access programmes (PAP/PSP) or new therapies available locally?

Yes

No

Education & Awareness

How familiar are you with rare diseases in your area of practice?

Very familiar

Somewhat familiar

Limited familiarity

What are the biggest challenges you face when managing patients with rare diseases?

What types of resources or support would you find most useful? (tick all that apply)

Diagnostic support or referral pathways

Treatment access guidance

Patient navigation resources

Educational materials or toolkits

Policy and regulatory updates

Research collaboration opportunities

What motivated you to engage with the rare disease community?

Any additional comments or suggestions for RDSA?

Consent & Communication

I consent to Rare Diseases South Africa storing and processing my data in accordance with POPIA.

I agree to receive relevant communication from RDSA regarding professional updates, opportunities, and events.

Yes

No

We’d love to get to know you better! Please upload a recent headshot so we can put a face to the name. Your photo helps us connect our community and will never be shared publicly without your consent.

We’d be grateful for your support in helping us continue our work! If you’re able, please consider making a financial donation to help us improve care, advocacy, and access for those living with rare diseases. Every contribution makes a difference.

R 100

R 250

R 500

Would you be open to setting up a recurring monthly donation to help us sustain our ongoing programmes and patient support services? Even small, regular contributions make a big impact over time.

Yes, please send me details

No, I am not able to donate regularly

Looking for disease related information?
Check out our Resource 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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