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Rare Lives Matter

Updated: Jun 3, 2021

“It doesn’t affect me, so I don’t have the capacity to deal with it right now”

~ All of us (at some point in our lives)

We don’t believe it’s a purely selfish mentality either – after all, as sentient beings, we also have an emotional quota (you know the “you can’t pour from an empty cup” theory) so we have to prioritise what gets our immediate attention. Fast forward to 2020 – a global pandemic, an already struggling economic situation and ever increasing political and social unrest… and people’s tolerance for others’ plight is stripped even thinner.

Whilst the Covid-19 pandemic has given the general population an insight into life as an immuno-compromised individual, it has also meant that, with their personal health and economic concerns, their ability to comprehend or actively contribute to others in a more dire position, has lessened.

We’re here to say we can understand that, but also to remind you that why - especially in these moments - it’s even more critical that you do.

Now before the “Karen’s” emerge and berate us for the title, we don’t for a second think the BLM movement doesn’t have merit nor do we think rare lives matter more than any other lives… in fact, that’s just the point, we just want the lives of those patients affected by rare conditions to be acknowledged on par with every other person in society (and again, much like the BLM movement, it feels bizarre that we even have to say it out loud when “equality” is a such a well-utilised buzzword globally by those in power).

People with rare conditions die daily - some undiagnosed, some misdiagnosed and some denied treatment because medical aid companies decided treatment was too expensive – and yet we don’t see protests or news coverage showing everyone’s disgust. Why is that you ask? Because there is a perception that people affected by rare conditions are a minority and when people aren’t directly affected, it isn’t high on their moral radar.

In light of Covid-19 and the heightened acknowledgement of personal health and the effect of illness or disability on our livelihoods…. We’d like to drop another truth bomb:


The intention is not to incite fear nor suggest you Dr Google any symptoms for self-diagnosis, but rather that you fully-comprehend that the chances of you or someone close to you, at some point in your lives, being diagnosed with a rare disease, is possible.

Sure, some people may be more genetically pre-disposed to rare conditions which makes their chances higher, but for many others – it is something that can emerge at any age, with varying degrees of severity. Many rare conditions don’t discriminate when it comes to gender or race and they definitely aren’t concerned about religion, dietary habits, fitness levels or economic standing. In some instances, as with our own CEO, there may be no family history of rare conditions on either side of the family BUT both parties carry a recessive gene that has a one in many million chance of being passed down. Until it does.

Rare Diseases can’t be avoided nor are they the result of anyone’s misbehaviour or poor life choices. No one is exempt from rare diseases, but unfortunately people’s compassion and acknowledgement of them only really commences when they have been directly or indirectly impacted by them.

When one talks about rare diseases, the general assumption (as the name suggests) is that they are few and far between and don’t affect the majority of society. And that’s where it’s all very wrong.

Whilst individually, the number of patients with a specific condition may be few, when you consider that there are more than 7000 different rare conditions (and many still undiagnosed and un-named), collectively this is a very large portion of society globally. Statistically, there are more people in the world living with rare conditions than those with cancer and HIV patients COMBINED…. Let that sink in for a minute. Sadly, almost all of us know someone who has been affected by Cancer in some form.

So this new year, as you start to consider resolutions, place more emphasis on health and contemplate ways to give back, we beg that you please consider Rare Diseases South Africa your charity of choice. This will ensure that we’re able to assist and advocate for those in need - who also happen to be someone’s child, brother, sister, coworker or life partner.

Ways to get involved:

1. Donate towards RDSA by clicking here

2. Make RDSA the beneficiary of your events or donations

3. Sign up and register RDSA as the recipient of your MySchool card proceeds here

4. Become a Rare ACTIVist and participate in sports events on behalf of RDSA by registering here

5. FUNdraise for RDSA - click here to find out more.

6. Sign up for a small monthly donation here

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