PATIENT ADVOCACY

Aim:  To represent patients affected by rare diseases and congenital disorders with regards to policy, healthcare costs and delivery. Patient Advocacy is the largest programme for RDSA, as the intended impact is critical to those impacted by rare diseases and congenital disorders. 

Patient Advocacy is the largest programme for RDSA, as the intended impact is critical to those impacted by rare Diseases.

The overall programme objectives are to;

  • 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

  • Provide tools and resources for civil society to include principles in advocacy efforts.

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

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

Generation Rare

To date, RDSA has over 200-member support groups listed under its umbrella, all at various stages of development. Over the years, RDSA is often 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 disease groups. However, due to inconsistent and often fragmented implementation the development and independent growth of these groups is often inadequate.

RDSA has come up with a proposed solution, where these groups are nurtured through a formal mentorship and incubation process with the intention to strengthen their efforts and build capacity, allowing them to evolve into mature support groups.

Support offered includes:

  • Office space, and telecom support (internet, printing etc)

  • 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

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PHYSICAL ADDRESS
Block 7, Ground Floor, Stratford Office Park, Valley Road, Broadacres 2021

 

POSTAL ADDRESS
Suite 135, Private Bag X43, Sunninghill, 2157

TELEPHONE  +27 72 476 7552

EMAIL ADDRESS hello@rarediseases.co.za

© 2023 by Rare Diseases South Africa NPC.