The RDSA PVA programme is for those members of our community who are wanting to make a significant difference in the lives of rare disease patients by representing RDSA and ensuring that the community voice is heard!
This project allows the patient community to assist RDSA in:
developing new resources
influencing policy development
providing insight to patient medication and device development
providing extended peer-to-peer support to ensure that patients do not feel isolated
helping us raise awareness of rare and genetic diseases across South Africa
Eligibility
Must be a registered RDSA member (either patient / caregiver / family member or HCP)
Over the age of 18
Living within South Africa
English proficiency required
Solid communication skills, including easing in using MS Teams e.t.c
Required Skills
Positive/enthusiastic towards healthcare, advocacy and rare diseases.
Key responsibilities and tasks
Be willing to be a public representative of RDSA at key meetings and events
Lead advocacy activities around RDSA community events and programmes.
Work with fellow PVA members, and the RDSA team
Promote RDSA as necessary in the media and share implementation stories on various communication platforms
Potential to participate in Patient Advisory Group projects
Potential to participate in regional and global meetings to represent priorities of RDSA community
ENROLLING NEW PATIENTS: When a new patient is identified, encourage them to register as a member of RDSA via the website, and welcome them to the community once they have been added to the support groups.
REPORTING PATIENT QUERIES / PROBLEMS: If a topic is discussed on the whatsapp group that requires RDSA involvement, alert RDSA team to the issue.
MONITOR PATIENTS MENTAL HEALTH AND NEEDS: If a patient is not coping emotionally, or is needing additional support, alert RDSA team.
DISTRIBUTION OF INFORMATION: Circulation of information that RDSA sends, as well as collate patient community feedback and send back upstream to RDSA.
Every Patient Ambassador will need to have a signed consent and release form, which we will email after the application is completed.
interested?
If this sounds like an opportunity you, please fill out the application form below and a RDSA team member will be in touch.
How are you impacted by a Rare condition?*
Are you currently employed?*
What Social Media Platforms do you utilise?*
Please provide a minimum of 3 references who can attest to your commitment and role within the community. At least 2 of these references need to be registered RDSA members.
acknowledgements and agreements
