Aug 6, 2026 · 42 min · 11 segments
Patient advocacy and effective communication are fundamental to shaping the future of genomic medicine. In this episode, we explore how advocacy organisations support individuals and families affected…
Kelly DuplessisGuest
Erin KinghornHost
Also, initially, when, you know, rare diseases South Africa started, there was a lot of work being done at European level for rare diseases, as well as in the UN, I mean, United States, but there was, there wasn't anything that was kind of global that and the LMICs, I think, were taking a bit of a beating in the sense that we had no voice in terms of global policy.
So we eventually rallied to start Rare Diseases International and that did start and it's 11 years old now as well.
And so I've been on the council for Rare Diseases International for a good couple of years.
So I think being able to represent Africa, because Africa was left out of the conversation completely, but also the LMICs, has just been such a passion thing for me.
When you're discussing things on a global level, it's sometimes when you listen to the solutions that are put forward by first world countries
etc and you just like you are so far removed from the needs of like grassroot people yeah like it's just they just really have no concept you know they'll be saying things like well why don't you just get the patients you know i mean surely we can get this medication to them and you're going they're traveling hundreds of kilometers They don't have electricity.
And even from a South African perspective, I think often you get judged because I do not necessarily look like the people I represent.
And I think very, very often individuals will look at the African perspective and they learn that that spirit of Ubuntu comes through in the work that we do.
So often they fail to launch because they're so busy hunting for that perfect solution.
And I think that that has been encouraging for a lot of the groups that we engage with.
Also, initially, when, you know, rare diseases South Africa started, there was a lot of work being done at European level for rare diseases, as well as in the UN, I mean, United States, but there was, there wasn't anything that was kind of global that and the LMICs, I think, were taking a bit of a beating in the sense that we had no voice in terms of global policy.
So we eventually rallied to start Rare Diseases International and that did start and it's 11 years old now as well.
And so I've been on the council for Rare Diseases International for a good couple of years.
So I think being able to represent Africa, because Africa was left out of the conversation completely, but also the LMICs, has just been such a passion thing for me.
When you're discussing things on a global level, it's sometimes when you listen to the solutions that are put forward by first world countries
etc and you just like you are so far removed from the needs of like grassroot people yeah like it's just they just really have no concept you know they'll be saying things like well why don't you just get the patients you know i mean surely we can get this medication to them and you're going they're traveling hundreds of kilometers They don't have electricity.
And even from a South African perspective, I think often you get judged because I do not necessarily look like the people I represent.
And I think very, very often individuals will look at the African perspective and they learn that that spirit of Ubuntu comes through in the work that we do.
So often they fail to launch because they're so busy hunting for that perfect solution.
And I think that that has been encouraging for a lot of the groups that we engage with.
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