Today, RDSA brings together international best practice and local medical innovation, driving a collective voice and playing a fundamental role in bridging the gap between vulnerable communities and medical advancement.
how we do it
Patient Advocacy is the largest programme for RDSA as the intended impact is critical to those impacted by rare diseases.
Aim: To represent patients affected by rare diseases and congenital disorders with regards to policy, healthcare costs and delivery.
​
The overall programme objectives are to:
​
-
Create a united voice within 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
-
Provide tools and resources for civil society to include principles in advocacy efforts.
advocate
verb [ad-vuh-keyt]
1. Publicly recommend or support
Aim: Ensure a challenge-free, supported journey from presentation of symptoms to end-of-life for patients affected by rare diseases and congenital disorders.
​
The overall programme objectives are to:
​
-
Develop clinical guidelines and referral pathways for identified rare diseases in South Africa.
-
Provide referral services for both treatment and support for patients with rare diseases.
-
Develop patient information/ educational material relating to disease, treatment and supportive services.
-
Provide case management services for patients requiring treatment.​
-
Provide tools and resource material to improve the patient journey.
navigate
verb [nav-i-geyt]
1. Sail or travel over (a stretch of water or terrain), especially carefully or with difficulty.
Our community engagement activities are aimed at improving the peer-to-peer support available to our community and raising public awareness on the plight of patients impacted by rare diseases and congenital disorders.
​
Aim: Collaborate with civil society, and the rare community, to ensure greater awareness and networking platforms for rare diseases and congenital disorders in South Africa.
​
Activities include:
-
Create awareness events and campaigns relating to rare diseases and congenital disorders.
-
Develop and distribute educational material and campaigns for the public and targeted stakeholders
-
Develop and participate in civil society alliances with linkages to the rare disease and congenital disorders patient journey
engage
verb [en-gey-ge]
1. Participate or become involved in
Aim: Rare Research focuses on key, patient centric issues relevant to the local and global rare disease and congenital disorder communities
​
​Targeted projects provide an evidenced-based foundation for our advocacy work, connect researchers and patients and highlight the lay expertise of those living with rare diseases and congenital disorders.
​
Spearheaded by Dr Helen Malherbe, RDSA Research underpins the RDSA advocacy efforts.
research
verb [ree-sur-ch]
​
1. To study a subject in detail, especially in order to discover new information or reach a new understanding