RDSA aims to represent patients affected by rare diseases with
regards to policy, healthcare costs and delivery.
RDSA provides services to patients, and those supporting them, who are navigating the complex healthcare system. We work directly with patients to ensure they have a voice in their care and have access to information to promote informed decision making.
Our Advocacy programmes include the following key areas:
Create a united voice in the rare disease community
Contribute and participate in policy development and service delivery
Monitor service delivery relating to rare diseases
Facilitate development and maintenance of patient registries
incorporate principles as Rare Disease patient charter in advocacy efforts
1. alternative reimbursement models steerco
Activity: Continued participation in the steerco which intends to address the need for alternative reimbursement models to be introduced in SA.
Intended Outcomes: Adopted framework to be used as guidelines to ARMs
Timeline: Ongoing - expected completed end 2022
Investment Requirement: R45 000 per annnum
Activity: Continued participation in the steerco which intends to address the need for a rare disease framework to be adopted at government level. Particularly focus on access and sustainability.
Intended Outcomes: Improved access and certainty for Rare Disease patients in South Africa, address issues around sustainability, Improved stakeholder awareness
Investment Requirement: R249 000 per annum
2. rare disease
3. public sector access project
Activity: Pursuit improved access in state hospitals to ensure certainty for patients in this sector.
Intended Outcomes: Improved referral of state patients for treatment; Improved multi-stakeholder collaborative efforts to increase public access; improved knowledge base for HCPs and KOLs
Timeline: 2021 / 2022
Investment Requirement: R109 100 per annum
Activity: Seeking clarity on the rights and responsibilities of patients with rare diseases in terms of the constitution and legal framework in South Africa.
Intended Outcomes: Develop firm understanding on patients rights and entitlements, improve knowledge transfer to patient community
Investment requirement: R300 000 per annum
4. understanding our rights initiative
5. annual stakeholder breakfast
Activity: Round Table discussion on current challenges and proposed solutions currently being faced by stakeholders.
Intended Outcomes: Identify key barriers for stakeholders operating in the rare disease sector; Determine areas requiring urgent change and incorporate into long term advocacy plan.
Investment requirement: R150 000 per annum
Activity: Implement a campaign on educating the public on the need for advocacy, the benefits and why it’s important to know and exercise your legal rights.
Intended Outcomes: Improved public awareness on topical issues; Multimedia storytelling
Investment requirement: R110 000 per annum
6. changing public opinion campaign
7. dynamic patient registry
Activity: Development of a dynamic, robust patient driven registry which can bridge the gap to improved data, as well as improved understanding on the needs analysis of our community.
Intended Outcomes: Functional, secure patient registry portal
Timeline: implementation 2022 / maintenance ongoing
Investment requirement: R150 000 per annum
Activity: The Patient Voices programme has been developed, with the aim to ensure that our work is continuously shaped by the patients which we represent.
Intended Outcomes: Develop new patient resources; Influence policy development; Partake in research; Provide insight into medication and device development; Provide extended peer-to-peer support to ensure patients do not feel alone or isolated; Increased sharing of best practices; ongoing capacity building, support group mentorship
Investment requirement: R525 000 per annum
With this programme we aim to allow the patient community to assist RDSA in:
Helping us develop new resources
Influencing policy development
Partake in research
Provide insight to patient medication and device development
Strengthen patient involvement
Check progress of RDSA projects as they develop
Provide extended peer-to-peer support to ensure that patients do not feel alone or isolated
Sharing of best practices and resources
Raising awareness of rare diseases across South Africa
"When the whole world is silent, even one voice becomes powerful.”
~ Malala Yousafzai
To date, RDSA has over 200-member support groups listed under its umbrella - all at various stages of development.
Over the years, RDSA has been frequently approached by these groups for support, advice and expertise with the aim of assisting them in achieving their respective objectives, raising awareness, and advocating for their specific disease groups.
Due to inconsistent and often fragmented implementation however, the development and independent growth of these groups is often inadequate.
RDSA developed Generation Rare with the intention of nurturing support groups through a formal mentorship and incubation process to strengthen their efforts and build capacity, allowing them to evolve into mature support groups.
Support offered includes:
Graphic design, brand management and strategic planning
Legal & financial support for compliance issues
Capacity building and support for business planning, company management like, board setup, HR, accounts, taxation, etc