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support

groups

In an effort to develop closer collaboration with our members, Rare Diseases South Africa (RDSA) is updating membership packages and processes. To reach the RDSA vision of readily accessible care and support for those affected or at risk of rare and congenital disorders, we believe we not only need to unite but to work together as a team. 

support group packages

Benefits include:

Addition to newsletter mailing list

 

Cost:

free of charge

friends of rare
membership

offered to new

support groups​​

Benefits include:

  • Website listing on PatientHub;

  • inclusion on advocacy mailing list;

  • monthly webinar access offered at membership rate;

  • access to preferred supplier directory; and,

  • networking events (at member rate); and,

 

Criteria for affiliate membership:

  • New, emerging support groups with growing membership;

  • Existing support groups in transition with the intention to become more established and to expand membership.

Cost

R315 per annum or R52.50 per month (via debit order).

affiliate support group 
membership

offered to smaller patient support groups for a period of two year

Benefits (valued at R10 000 per year) include:

  • website listing on PatientHub;

  • inclusion on advocacy mailing list;

  • 1x user access to monthly webinar;

  • access to preferred supplier directory;

  • organisational use of online conferencing facilities including cloud recordings;

  • 1x entry into the Annual Patient Group Huddle event;

  • one registration to RareX biannual conference including 1x support group exhibit table;

  • access to premium administrative services (i.e. accounting, PR, design, social media) at heavily discounted rates;

  • plus 1x nominated representative included on the Patient Voices programme

Criteria for Full membership includes:

  • Registration with Department of Social Development (valid NPO number);

  • Have a clear vision, mission and strategy;

  • Established membership (relative to disease incidence);

  • Regular, appropriate communication with members, and;

  • Linkages with key stakeholders.

Cost:

R1575 per annum

full support group 
membership

offered to larger, established patient support groups

register today as a support group and help RDSA support our rare community
Anchor 1

Support Group Information

Physical / Administrative Address
Are you a formally registered entity?
How long has your support group been in existence?
Just started
Less than 1 year
1–3 years
3–5 years
5–10 years
More than 10 years

Group Representative

Group Focus & Activities

What is the main focus or purpose of your group?
Does your group host regular meetings or events?
Yes (both in person and Online)
Yes, online only
Occasionally
Not currently
How do you primarily communicate with members?

Governance & Group Management

Does your group have a written constitution or guiding document?
Yes
No
In Development
Does your group have a formal board / leadership structure or committee?
Yes
No
In Development
Do you have any healthcare professionals (e.g., doctors, nurses, genetic counsellors) serving on your committee or advisory board?
Yes
No
Occasionally consulted
Does your group have any formal working groups or subcommittees?
Yes
No
In development
Are there established rules or guidelines for member participation?
Yes
No
Are group discussions (online or in person) moderated?
Yes
No
Not Applicable

Funding & Sustainability

Does your group have its own bank account?
Yes
No
How is your support group currently funded? (Select all that apply)
What is your biggest financial need at present?
Do you have an annual budget or financial report?
Yes
No
Not yet established
Do you require RDSA to provide capacity-building support in the following areas?

Collaboration with RDSA

Can RDSA include your group in our directory of recognised support groups?
Yes
No
How can new patients or families join your group?
What kind of support or collaboration would you like from RDSA?
Would your group be interested in participating in joint research, surveys, or awareness initiatives?
Yes
No
Would need more information
What benefits or support are you hoping to gain through membership?

Consent

Membership Tiers

looking for support?

click here to visit our support groups index
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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

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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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