A seat at the table, not a seat at the wheel.
The Rare Disease Partnership Programme is a structured forum for commercial companies to support the rare disease cause in South Africa, and to understand what actually matters to the people living with these conditions. It is built on a long-term relationship and constructive dialogue, with clear limits on all sides.
What the programme sets out to do
Build a regional network of companies working in areas that affect people living with rare diseases.
Exchange perspectives on issues of mutual interest across our programme areas: navigation, engagement and advocacy.
Stimulate companies across many industries to address the needs of patients.
Provide financial support to advance RDSA's mission and vision.
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How it works in practice
Membership is an active commitment, not a logo placement. Members commit to attending at least two RDSA meetings each year.
TWICE A YEAR
Roundtables
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Companies, patient advocates, experts and public officials together, working through the practical barriers to treatment and care. One in person, one virtual.
QUARTERLY
One-on-One meetings
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Direct sessions with each partner to align on priorities and patient-centred outcomes.
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AS REQUIRED
Workshops and town halls​
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Turning the issues raised at roundtables into practical next steps and joint plans.
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Meetings are attended by staff of member organisations only. Contract consultants and external advisors may not attend on a member's behalf.
The guardrails, stated plainly
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RDSA is the voice of the four million South Africans living with rare diseases, and that voice cannot be for sale. Every member accepts a code of conduct before joining. It says, among other things:
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The RDPP is not a platform to advocate for, or attempt to influence, specific decisions or positions of RDSA.
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Participation has absolutely no influence on the decisions RDSA representatives make in their patient advocacy role.
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RDSA remains neutral with respect to specific products and services, and independent in its advocacy positions, its educational materials and its policy priorities.
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RDSA and its member organisations represent people affected by rare diseases, and are entitled to express critical views on any relevant matter.
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Members support equitable access to treatments and services in a sustainable manner.
We are direct about this because it protects both sides. Our community needs to know our positions are our own, and our partners need a forum they can participate in without compliance risk.
What membership involves
An unrestricted annual contribution
Set annually by RDSA. Unrestricted means it supports the mission rather than being tied to a specific deliverable, which is part of what keeps the relationship at arm's length.
Acknowledgement
Members are acknowledged in the RDSA Annual Report and on the funding section of our website.
Participation
A commitment to attend at least two RDSA meetings a year, and to sign the code of conduct.
Room to do more
Members can engage RDSA on other projects separately, including funding the Patient Voices Programme, conferences and public education, specific projects, one-off donations, or in-kind support.
Why companies find this worth doing
Compliance and credibility
A structured, documented forum with a signed code of conduct demonstrates a commitment to ethical engagement with the patient community, in a space where informal relationships carry real risk.
Transparency
Membership fees put the relationship on the record, so that engagement between RDSA and commercial companies is conducted openly rather than ad hoc.
Patient insight you can't get elsewhere
We work with patients on which outcome measures matter to them, and which aspects of a clinical trial would influence their decision to take part. That insight shapes better research and better access strategies.
Direct benefit to the community
The contribution funds the navigation, education and advocacy work that reaches patients. That is the point of the programme, and the reason it exists.