RDSA-Web-PatientAdvocacy-Banner-05.jpg

advocacy

patient

PatientVoices-Logo-RGB_HR.png

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

PatientVoices-2-34.png

The Patient Voices programme has been developed, with the aim to ensure that our work is continuously shaped by the patients which we represent.

Rare Diseases_Flat Design 2019(NN)-GetIn

  • 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

meet an
ambassador
become an
ambassador
GenRare-Logo-RGB-HR.png

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