The RDSA Rare Diseases Partnership Programme (RDPP) is a platform for commercial companies to support the rare disease cause, and develop a greater understanding of issues of importance to Persons Living with Rare Diseases (PLWRD) in South Africa.
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The RDPP aims to foster a long-term collaborative relationship and a constructive dialogue between RDSA and a select group of leading companies committed to helping people with rare diseases. Members include pharmaceutical, biotech and medical device companies that are developing or marketing therapeutic or diagnostic products, as well as companies that are engaged in other aspects of healthcare for the rare disease/orphan product community such as specialty pharmacies, distributors, contract research organizations, and integrated healthcare systems.
Through the RDPP, RDSA aims to work with the corporate health sector to share its expertise engaging public and private institutions involved in the rare disease and orphan drug fields.
The RDPP will engage commercial companies to:
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Build a regional network of companies working in areas that affect PLWRD.
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Exchange perspectives on issues of mutual interest, as reflected in RDSA’s programme areas (Advocacy, Navigation, Engagement and Research.)
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Stimulate companies across many industries to address the needs of patients
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Provide financial support to advance RDSA’s mission and vision
Membership
Companies joining the RDPP make an unrestricted annual contribution (to be determined annually by RDSA) towards advancing the mission of RDSA.
Members of the RDPP will need to acknowledge the Code of Conduct and make a commitment to participate in at least two RDSA meetings each year.
Discussions and participations in the RDPP will take place as follows:
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Biannual RDPP roundtable meeting, bringing together companies, patient advocates, experts and public officials to discuss concerns and practical barriers to treatment and care. One meeting will be held in person, and one meeting held virtually per annum.
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RDPP Workshops and town hall meetings to be held as deemed necessary to address areas identified at the roundtable meetings, which require collaborative discussion to further analyse and develop joint plans to address.
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Quarterly one-on-one meetings with each partner.
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2024 Annual Contribution: R80 000.00
Commercial companies who are members of the RDPP, will also be able engage RDSA on other projects, including;
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Funding of RDSA Patient Voices Programme
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Funding of RDSA Conferences / Public education Programmes
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Funding of RDSA partner projects
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One-off charitable donations
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Other In-kind support
RDPP members will be also acknowledged in the RDSA Annual Report and on the funding section of www.rarediseases.co.za