SIGNING UP AS A RARE SUPPORT GROUP

Sign up today as a Support Group and help Rare Diseases SA support our Rare Community!

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. 

 

There are 3 options available.

  1. Friends of Rare: Free of Charge.

  2. Affiliate Support Groups:  R300 per annum or R50 per month (via debit order).

  3. Full Support Group Membership: R1500 per annum (valued at R10 000 per year).

FRIENDS OF RARE MEMBERSHIP

  • offered to very new support groups

  • free of charge.

Benefits include:

  • Addition to newsletter mailing list

AFFILIATE SUPPORT GROUP MEMBERSHIP

  • Offered to smaller patient support groups for a period of two years.

  • Cost of R300 per annum or R50 per month (via debit order).

Benefits include:

  • Website listing on PatientHub;

  • inclusion on advocacy mailing list;

  • monthly webinar access offered at membership rate;

  • access to preferred supplier directory;

  • networking events (at member rate); and,

  • use of meeting facilities (boardroom) at member rates.

 

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.

 

FULL SUPPORT GROUP MEMBERSHIP

  • For larger, established patient support groups

  • Cost of  R1500 per annum.

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;

  • hotdesking space at RDSA Jhb offices;

  • use of meeting facilities (boardroom) for two hours per month;

  • 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.

REGISTER AS A SUPPORT GROUP

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Do your members have face-to-face meetings regularly?
Are their established ground rules for participation in the Groups activities?
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Are your online group discussions moderated?
Can Rare Diseases South Africa include you in our list of preferred support groups?
How can patient's join your support group?
Do you want to become a member of Rare Diseases South Africa?

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