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advocacy

patient

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

Timeline: Ongoing

Investment Requirement: R249 000 per annum

2. rare disease 
access initiative
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

Timeline: Ongoing

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.

Timeline: Ongoing

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

Timeline: Ongoing

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

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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

Timeline: Ongoing

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

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  • 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

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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

  • Fundraising support

  • Capacity building and support for business planning, company management like, board setup, HR, accounts, taxation, etc