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our 

our

purpose

 

Bridging the gap to improved quality of life for those impacted by rare diseases and congenital disorders through advocacy and empowerment. 

mission statement

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who we serve

Rare Diseases South Africa advocates to have rare diseases and congenital disorders recognised and treated.


By connecting patients, families and patient groups, bringing together stakeholders and mobilising the South African rare disease and genetics community, Rare Diseases South Africa strengthens the patient voice and shapes research, policies and patient services.

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why we

do it

Statistics indicate that 1 in 15 South Africans are affected by rare diseases. Despite this, the rare community are severely under-represented and remain vulnerable from a medical and policy perspective.

 

RDSA aims to provide a better tomorrow for those living with rare diseases.

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